>> GOOD MORNING AND WELCOME TO THIS MEETING OF THE INTERAGENCY AUTISM COORDINATING COMMITTEE. AS MANY OF YOU KNOW, I'M JOSHUA GORDON, THE CHAIR OF THE IACC. WITH ME IS SUSAN DANIELS, DESIGNATED FEDERAL OFFICIAL. THANK YOU FOR MAKING IT HERE, THOSE OF YOU WHO'VE DONE, SO DESPITE THE WEATHER THIS MORNING MORNING. APPARENTLY SCHOOLS IN MONTGOMERY COUNTY ARE CLOSED WHICH ASTOUNDS ME AS SOMEONE WHO SPENT YEARS IN MINNESOTA. [LAUGHTER] BUT I'M GLAD ALL OF YOU COULD MAKE IT HERE. WE HAVE A FULL AGENDA TODAY, ENCOMPASSING COMMITTEE BUSINESS INCLUDING OUR SUMMARY OF THE -- DISCUSSION, DISCUSSION OF THE WORK GROUP THAT IS FORMING AND SOME OTHER ITEMS. WE ALSO HAVE PRESENTATIONS ON THE INDIAN HEALTH SYSTEM AND ON AUTISM SCREENING EFFORTS, AND AS WELL AS OUR USUAL PUBLIC COMMENT, SO THANK YOU FOR COMING. I'M GOING TO TURN THE MIC OVER TO SUSAN, WHO WILL CONDUCT ROLL CALL AND PASSING THE MINUTES. >> GOOD MORNING AND WELCOME. GLAD TO SEE YOU ALL HERE, AND GLAD SO MANY OF YOU COULD MAKE IT IN SPITE OF THE INCLEMENT WEATHER. SO I'LL GO AHEAD AND TAKE ROLL CALL. JOSHUA GORDON, HERE. JIM BATTEY, PRESENT. DEANNA BIANCHI, HERE. CINDY LAWLER, LINDA BIRNBAUM I THINK WERE BY PHONE. >> YES, I'M HERE. >> ON THE PHONE? >> YES. >> THANKS. CARRIE WOLINETZ, HERE. RUTH ETZEL, HERE. TIFFANY FARCHIONE? MARGUERITE FOR MELISSA HARRIS? JENNIFER JOHNSON, I'M HERE ON THE PHONE. >> THANK YOU. LAURA KAVANAUGH >> HERE. MINA SHORE FOR WALTER KOROSHETZ, HERE. LAURA PINCOCK? MARCI RONYAK, PRESENT. STUART SHAPIRO, HERE. MELISSA SPENCER? LARRY WEXLER, HERE. NICOLE WILLIAMS, ON THE PHONE? OH, IN PERSON. HERE. THEN DAVID AMRAW, HERE. SAMANTHA CRANE, HERE. JERRY DAWSON ON THE PHONE, YES, I'M HERE. >> THANKS. DAVID MANDELL >> PRESENT. KEVIN PELPHREY, HERE. EDLYN PENA? LEWIS REICHARDT, HERE BY PHONE. >> THANK YOU. ROB RING, HERE BY PHONE. >> THANK YOU. JOHN ROBISON, I'M HERE. ALISON SINGER, I'M HERE. JULIE TAYLOR BY PHONE, YES, I'M HERE. >> THANK YOU. ALL RIGHT. SO WE HAVE EVERYONE AND THERE MIGHT BE A FEW PEOPLE JOINING A LITTLE BIT LATE BY PHONE. SO WE HAVE THE MINUTES, THE MINUTES FROM THE LAST MEETING, THE DRAFT IS IN YOUR FOLDERS AND WE SENT THAT OUT IN ADVANCE. DOES ANYONE HAVE ANY COMMENTS OR ANYTHING THAT THEY FEEL NEEDS TO BE UPDATED BEFORE WE FINALIZE THOSE MINUTES? >> KE WE HAVE A MOTION ON THE FLOOR TO ACCEPT THE MINUTES? A.MOVE TO ACCEPT THE MINUTES AS WRITTEN. >> I'LL SECOND IT. >> THANK YOU. ANY OPPOSED, ANY ABSTAINING? SO THE MOTION CARRIES TO PASS THESE MINUTES AND WE WILL BE POSTING THEM TO THE WEB SOON AFTER THIS MEETING. THANK YOU. >> I WANT TO PARTICULARLY WELCOME NINA SHORE, BRAND NEW DEPUTY DIRECTOR AT NATIONAL INSTITUTE OF NEUROLOGIC DISEASE AND STROKE REPRESENTING WALTER KOROSHETZ, GLAD TO HAVE YOU HERE. AND NOW WE'LL MOVE RIGHT INTO THE PROGRAM THEN. SO IT'S MY PLEASURE TO INTRODUCE DR. MARCELLA RONYAK, WHO IS THE DEPUTY DIRECTOR OF THE DIVISION OF BEHAVIORAL HEALTH, INDIAN HEALTH SERVICE, GOING TO BE TALKING TO US ABOUT ADVANCING BEHAVIORAL HEALTH IN THE INDIAN HEALTH SYSTEM. >> GOOD MORNING, EVERYBODY, AND THANK YOU ALL FOR TAKING THE EXTRA EFFORT TO GET HERE THIS MORNING. IT IS AN HONOR TO BE HERE THIS MORNING AND I WAS EXTREMELY EXCITED WHEN DR. DANIELS HAD REQUESTED INDIAN HEALTH SERVICE TO DO A PRESENTATION. BUT BEFORE I GET STARTED INTO THE PRESENTATION, CAN I SEE OF THE AUDIENCE HOW MANY IN THE ROOM WOULD SAY THEY KNOW EXTENSIVELY WHAT INDIAN HEALTH SERVICE DOES OR HOW WE EVEN DELIVER SERVICES? YEA, I HAVE A FEW! EXCELLENT. SO WHAT I DID WITH THE PRESENTATION, JUST TO KIND OF GIVE YOU THE LAY OF THE LAND OF HOW WE'RE GOING TO MOVE FORWARD WITH THIS ONE IS, I'M GOING TO TALK A LITTLE ABOUT THE OVERVIEW OF INDIAN HEALTH SERVICE. I MYSELF AM A CONSUMER OF INDIAN HEALTH SERVICE. NOW THAT I'M MOVED TO D.C., I'M CONSIDERED AN URBAN INDIAN AND NO LONGER A CONSUMER OF TRIBAL SERVICES BUT COULD BE A CONSUMER OF URBAN INDIAN HEALTH SERVICE, SO I KIND OF WANT TO TALK ABOUT THE DIFFERENCE OF THAT BECAUSE THAT DOES CHANGE HOW SERVICES ARE DELIVERED, AND HOW RESOURCES CAN MEET THE COMMUNITY. SO WE'LL TALK ABOUT THAT A LITTLE BIT. WE'LL ALSO TALK ABOUT OUR CURRENT BEHAVIORAL HEALTH INITIATIVES. I'M A LITTLE PRESSURED IN WHAT WE HAVE GOING ON BECAUSE I AM THE DEPUTY DIRECTOR OF THE DIVISION OF BEHAVIORAL HEALTH. I AM A MEMBER OF THE CALDWELL CON FEDERATED TRIBES WHICH IS IN NORTH CENTRAL WASHINGTON, SO I MOVED FROM WASHINGTON TO WASHINGTON, AND WITH THAT, IT WAS VERY INTERESTING TO SEE HOW SERVICES WERE DELIVERED WHEN I ACTUALLY WAS BORN AND RAISED, I WAS RAISED IN CALIFORNIA, IN SACRAMENTO, AND I AGAIN WOULD BE CONSIDERED AN URBAN INDIAN, IF YOU WILL, BECAUSE THERE WERE NO TRIBAL RESERVATIONS AROUND US, AND ONCE I MOVED BACK HOME WHAT WE WOULD CALL TO OUR RESERVATION, I WENT IN AS A SOCIAL WORKER AND THEN GOT MY CLINICAL DEGREE IN PSYCHOLOGY AND STARTED AS A TRIBAL PSYCHOLOGIST, SO I'VE SEEN QUITE A GAMUT OF SERVICES SO I KIND OF WANT TO TALK ABOUT THAT AS WELL DURING THE PRESENTATION BECAUSE I THINK IT GIVES A DIFFERENT LENS AS TO NOT ONLY BEING A CONSUMER BUT BEING A PROVIDER AND THEN BEING A PROVIDER THAT HAD TO DEAL WITH THE PROVERBIAL WALL OF LACK OF ACCESS TO CARE, WHICH BROUGHT ME TO WASHINGTON, D.C. SO I'LL KIND OF TALK ABOUT THAT AS WELL. THE THIRD PIECE I'LL ROLL INTO IS DISCUSSING OUR IMPACT OF TELEHEALTH AND TELEBEHAVIORAL HEALTH SERVICES. INDIAN HEALTH SERVICE HAS MADE DRAMATIC LEAPS AND BOUNDS, AND THAT'S PART OF HOW WE'RE ABLE TO REACH OUR POPULATION SO I KIND OF WANT TO WRAP IT ALL TOGETHER, SO FEEL FREE TO ASK QUESTINS AS WE GO ALONG OR WE CAN HAVE QUESTIONS AT THE END. I'LL OKAY WITH EITHER WAY. SO IF WE TALK ABOUT INDIAN HEALTH SERVICE, OUR MISSION REALLY IS TO RAISE THE PHYSICAL, MENTAL, SOCIAL AND SPIRITUAL HEALTH OF AMERICAN INDIAN AND ALASKAN NATIVE POPULATIONS. WITH THAT, THE AMAZING PIECE OUT OF THAT IS HOW DO WE ENSURE THAT WE HAVE NOT ONLY COMPREHENSIVE SERVICES BUT CULTURALLY APPROPRIATE SERVICES. MANY IN THE ROOM WILL KNOW THAT EVERYTHING WE TALK ABOUT IS EVIDENCE-BASED PRACTICES. SO THE PROBLEM THAT WE HAVE IS EVIDENCE-BASED PRACTICES MAY NOT ALWAYS WORK WITHIN TRIBAL OR DIVERSE COMMUNITIES, AND SO NOT ONLY DO WE WANT TO THINK ABOUT HOW CAN WE ADAPT EVIDENCE-BASED TREATMENTS TO WHATEVER POPULATION WE'RE WORKING TO, BUT WE REALLY WANT TO THINK ABOUT CULTURALLY HOW DOES THAT IMPACT SOMEBODY. I WOULD HONESTLY SAY THAT EVERYBODY IN THIS ROOM BRINGS SOMETHING UNIQUE TO THE TABLE, AND SO WHEN WE'RE LOOKING AT TREATMENT, WE NEED TO LOOK AT THE UNIQUE OPTIONS THAT WOULD BE FOR THAT INDIVIDUAL, THAT FAMILY AND THAT COMMUNITY, AND THAT'S ONE THING THAT IHS REALLY TRIES TO DO. THE OTHER PIECE OF IT IS, INDIAN HEALTH SERVICE WAS PUT IN PLACE BY LOTS OF LEGISLATION, WHICH I HAVE HERE ON THE RIGHT HART OF THE SCREEN AND IT REALLY IS TO UPHOLD THE FEDERAL GOVERNMENT'S OBLIGATION TO TRIBAL SOVEREIGNTY. WHEN WE TALK ABOUT TRIBAL SOVEREIGNTY, IT'S A GOVERNMENT TO GOVERNMENT RELATIONSHIP, SO THE FEDERAL GOVERNMENT HAS A RELATIONSHIP WITH ALL OF THE TRIBAL GOVERNMENTS. ON THE SPRING SLIDE I'M GOING TO SHOW YOU HOW MANY TRIBES WE HAVE, WHICH IS 567 FEDERALLY RECOGNIZED TRIBES, AND I WILL ALSO TALK ABOUT THE DIFFERENCE BETWEEN FEDERALLY RECOGNIZED TRIBES AND STATE TRIBES. SO IHS HAS FOUR MAIN PRIORITIES WHICH ARE PEOPLE, WHICH ARE OUR SERVICE POPULATION, OUR PARTNERSHIPS, WHICH ARE EVERYONE HERE IN THIS ROOM, INCLUDING OTHER FEDERAL PARTNERS, PRIVATE SECTORS, AND ALSO IF WE THINK ABOUT, LIKE, TRIBAL ORGANIZATIONS, THOSE ARE CONSIDERED OUR PARTNERS AS WELL. WE ARE VERY MUCH ABOUT QUALITY, SO IT'S IMPROVING QUALITY AND SERVICES, AND ALSO ABOUT RESOURCES. SO THOSE ARE OUR FOUR MAIN PILLARS THAT WE WORK FROM. SO WHEN WE THINK ABOUT THE TRIBAL POPULATION, IHS ACTUALLY SERVES 2.2 MILLION AMERICAN INDIAN AND ALASKA NATIVES WITHIN THE UNITED NATIONS, SO IF WE KIND OF THINK ABOUT THAT, THAT'S A LOT OF PEOPLE, AND WE HAVE TO THINK OF UNIQUELY HOW THAT'S DIFFERENT. SO UP IN THE TOP LEFT, YOU CAN SEE WE HAVE DIFFERENT AREAS AND THEY'RE HARD TO SEE ON HERE SO MY APOLOGIES FOR THAT. IHS IS BROKEN UP INTO 12IHS AREAS, SO EACH OF THOSE COLORS HAS AN IHS AREA. AND EACH AREA OPERATES WHAT WE CALL OUR DIRECT SERVICES OR SERVICE UNITS WITHIN THAT AREA. SO MIND YOU, WE ARE ONE IHS. IT DOESN'T MEAN THAT WE HAVE ONE COOKIE CUTTER MODEL THAT COVERS ALL OF IHS. SO WE TRULY WORK WITH 12 DIFFERENT MODELS BECAUSE IT DEPENDS ON WHAT THE NEEDS ARE WITHIN THAT COMMUNITY. SO LIKE I HAD MENTIONED, WE DO HAVE 567 FEDERALLY RECOGNIZED TRIBES, THAT IS WHO OUR TRIBAL OBLIGATION AND FEDERAL OBLIGATION IS TO. THERE ARE STATE TRIBES AND THE DIFFERENCE BETWEEN THAT IS FEDERALLY RECOGNIZED TRIBES ARE TRIBES THAT THE FEDERAL GOVERNMENT HAS RECOGNIZED DUE TO BLOOD QUANTUM AND DUE TO LEGISLATION AND THE FACT THAT YOU DO HAVE FEDERAL LAND THAT IS THEIR RESERVATION. STATE TRIBES OFTEN DO NOT HAVE A RESERVATION, PER SE, AND MAY HAVE NOT HAD THE SAME BLOOD QUANTUM AND SO THEN THOSE FOLKS MAY NOT ALSO RECEIVE DIRECT SERVICES. YES, SIR? >> I'M WONDERING, CAN YOU DEFINE WHAT BLOOD QUANTUM IS? I'M NOT FAMILIAR WITH THE TERM. >> THANK YOU. PLEASE ASK ANY QUESTION. SO A BLOOD QUANTUM IS A PERCENTAGE OF OUR ACTUAL BLOOD THAT WOULD BE WITHIN A FEDERALLY RECOGNIZED TRIBE. SO FOR MYSELF, I'M CALLVILLE, I HAVE OVER 25% WHICH IS THE MINIMUM FOR MY TRIBE TO BE FEDERALLY RECOGNIZED BUT IT DOESN'T MEAN THAT I DON'T HAVE OTHER BLOOD QUANTUM FROM OTHER TRIBES. MY DAUGHTER HAS BLOOD QUANTUMS FROM THE YAKAMA TRIBE, THE UNITED TRITE AND THEN FROM THE CALLVILLE TRIBE SO SHE HAS MORE BLOOD QUANTUM THAN I DO. PEOPLE WITH VARIOUS BLOOD QUANTUM, DEPENDING ON IF THEY HAVE 25% OF EACH TRIBE, WOULD THEN HAVE TO CHOOSE TO BE ENROLLED IN ONE OF THOSE TRIBES AND THAT'S WHERE YOU WOULD CALL, LIKE, YOUR HOME TRIBE. SO THANK YOU FOR THE QUESTION. SO WHEN WE THINK OF INDIAN HEALTH SERVICE, ONE OF THE PIECES I WANT TO SPEND SOME TIME ON IS THE BOTTOM OF THE SLIDE. WE DO HAVE IHS HOSPITALS THAT PROVIDE DIRECT CARE, SO WE HAVE 26 HOSPITALS, AND 22 TRIBAL HOSPITALS. THE DIFFERENCE BETWEEN AN IHS HOSPITAL MEANS IT'S RAN BY IHS DIRECTLY IN FUNDS, AND THAT INCLUDES STAFFING, AND TRIBAL HOSPITALS ARE RAN BY THE TRIBES, SO TRIBES CAN CHOOSE TO WHAT WE CALL COMPACT OR CONTRACT, AND THAT IS WHERE A TRIBE WOULD COME FORTH AND SAY WE BELIEVE WE CAN PROVIDE SERVICES BETTER THAN IHS OR WE CHOOSE TO PROVIDE SERVICES RATHER THAN LET IHS RUN THE FACILITY, AND WE AS A TRIBE WOULD LIKE TO PULL SHARES OR MONEYS DOWN FROM THE INDIAN HEALTH BUDGET, WHICH I'LL TALK ABOUT IN A FEW SLIDES, AND WE WILL TAKE THOSE FUNDS AND WE WILL PROVIDE THOSE SERVICES THAT ARE NEEDED FOR OUR COMMUNITY. SO YOU'RE GOING TO HEAR ME TALK ABOUT IHS FACILITIES AND TRIBAL FACILITIES AND THAT'S HOW THE FUNDS GET SEPARATED AND THAT ALSO DEPENDS ON WHO'S MANAGING THOSE PROGRAMS. SO THEN WE ALSO HAVE HEALTH CENTERS WHICH ARE NOT FULL HOSPITALS AND WE HAVE 53 IHS AND 289 TRIBAL. YOU'RE GOING TO NOTICE SOME OF OUR NUMBERS ARE VERY LOPSIDED AND WE'RE GOING TO TALK ABOUT WHY. IN OUR ALASKA VILLAGE CLINICS, THERE'S 150 JUST IN ALASKA. SO THAT'S IN ADDITION. THEN IN OUR URBAN COMMUNITIES, WE HAVE 34 IHS FACILITIES WITHIN OUR URBAN COMMUNITIES, AND THEN WE HAVE WHAT'S HEALTH STATIONS. HEALTH STATIONS ARE SMALL STATIONS WHERE PROVIDERS EITHER COME IN REMOTELY, SO THERE'S A LOT OF TELEHEALTH, OR THEY MAY HAVE JUST ONE PROVIDER THERE OPERATING THE ENTIRE CLINIC AND IT'S REALLY KIND OF A CHECKPOINT, IF YOU WILL, THAT SOMEONE WOULD COME IN, HAVE AN ASSESSMENT AND IF THEY NEEDED TO BE REFERRED OUT, THEN THEY WOULD BE REFERRED OUT TO A HOSPITAL OR A BIGGER HEALTH CENTER. AND THEN WE VL SCHOOL HEALTH CENTERS. SO BECAUSE IHS IS A FEDERAL SYSTEM, ONE OF THE THINGS WE ALSO HAVE TO THINK ABOUT IS WE DO HAVE PARTNERS WITHIN BUREAU OF INDIAN AFFAIRS AND BAUER OWE OF INDIAN EDUCATION, BOTH PART OF THE DEPARTMENT OF INTERIOR. SO WE HAVE SCHOOLS THAT ARE CALLED BIE, WHICH IS BUREAU OF INDIAN EDUCATION, AND WITHIN THOSE SCHOOLS, THERE MAY BE HEALTH CENTERS PLACED THERE FOR THE STUDENTS TO HAVE HEALTHCARE RIGHT THERE ON CAMPUS. I HAPPEN HAPPENED TO BE PLACED AT ONE OF THE SCHOOLS THAT WAS CONSIDERED TRIBALLY RAN, BUT WE DID GET BIE FUNDS AND WE DID HAVE A HEALTH CENTER, IF YOU WILL, IN OUR SCHOOL WHICH WAS AMAZING BECAUSE STUDENTS COULD SEE A NURSE IMMEDIATELY, WE COULD MAKE CONTRACTS OR MO MOAs WITH SURROUNDING REGIONAL PROVIDERS THAT COULD COME IN ONCE A MONTH OR ONCE EVERY WEEK AND DO PHYSICALS FOR OUR ATHLETES, DO HEALTH CHECKS FOR THE STUDENTS, WE HAD DENTAL COME IN, SO THIS WAY STUDENTS WEREN'T TRANSPORTED AWAY FROM THE SCHOOLS ABOUT SERVICES WERE PROVIDED THERE WITHIN THE SCHOOL SCHOOL. SO WHEN WE TALK ABOUT THE BUDGET, IHS HAS A BUDGET THAT I KIND OF WANT TO SEPARATE OUT TWO DIFFERENT THINGS. WE HAVE A DISCRETIONARY BUDGET, $4.9 BILLION, THEN YOU WOULD ADD FOR SPECIAL DIABETES PROGRAM FOR INDIANS, WHICH IS $147 MILLION. SO PART OF THAT PROGRAMMING WAS BECAUSE, CLEARLY, IT WAS IDENTIFIED THAT WILL WITHIN AMERICAN INDIAN AND ALASKA NATIVE POPULATIONS, DIABETES IS ONE OF THE MEDICAL CONDITIONS THAT WE WORK WITH AND WE FOCUS ON, AND CLEARLY, MANY OF US IN THE ROOM KNOW THAT WHEN THERE'S A MEDICAL CONDITION ON BOARD, THERE IS OFTEN BEHAVIORAL HEALTH OR WHAT WE CALL MENTAL HEALTH CONDITIONS AS WELL. THERE'S OTHER FEELINGS THAT COME ALONG WHEN WE HAVE A MEDICAL DIAGNOSIS, AND SO IT WAS REALLY IMPORTANT WE GOT ADDITIONAL FUNDS. SO RIGHT NOW OUR '17 BUDGET WAS $5.1 BILLION. THE REASON I BRING THAT UP IS NOW WE WILL SEE HOW MANY FUNDS WE PUT TOWARDS MENTAL HEALTH AND ALCOHOL AND SUBSTANCE ABUSE. SO FOR ALCOHOL AND SUBSTANCE ABUSE IN PARTICULAR, WE HAVE 2.1 MILLION AND FOR MENTAL HEALTH, WE HAVE $94 MILLION, SO A TOTAL OF $312.4 MILLION. IF WE LOOK AT THAT IN COMPARISON TO THE BILLIONS THAT WE GET, IT'S A VERY SMALL BUDGET. AND SO WE REALLY HAVE TO FOCUS ON THAT PEOPLE AND THAT PARTNERSHIP AND THE QUALITY AND OUR RESOURCES WHICH ARE OUR PRIORITIES WITHIN IHS BECAUSE WE HAVE TO REALLY MAKE OUR EFFORTS COUNT, WE HAVE TO LOOK AT HOW ARE WE GOING TO HAVE OUTCOMES WITH THE FUNDS THAT WE HAVE. SO WITH THAT, WE'LL KIND OF TALK ABOUT HOW THAT'S SPLIT UP. SO ON THIS PARTICULAR SLIDE, UNDER MENTAL HEALTH, YOU'LL SEE THE DARK PIECE ON THE BOTTOM. WHAT'S IMPORTANT TO NOTE IS THAT 60%, WHICH IS THE GREEN UP ON TOP, ARE THE FUNDS THAT ARE SENT OUT TO THE TRIBES. SO OUT OF OUR IHS BUDGET FOR MENTAL HEALTH, WE SEND 60% OF OUR MONEY OUT TO THE TRIBES TO RUN THEIR TRIBAL FACILITIES THAT WE JUST TALKED ABOUT. WHEN WE LOOK AT THE ALCOHOL SIDE, WE ONLY HOLD 20%, GIVE OR TAKE A LITTLE BIT, AS IHS. THE REST, OR OVER 80%, IS SENT OUT TO THE TRIBES. AGAIN, IF WE'RE LOOKING AT HOW DO WE MAKE THAT BIG IMPACT, IT'S VERY DIFFICULT WHEN PEOPLE SAY, WELL, IHS IS NOT DOING ENOUGH OR IHS ISN'T ABLE TO DO ENOUGH. IF YOU THINK ABOUT IT, MANY OF OUR FUNDS ARE SENT OUT TO THE TRIBES. SO IHS TAKES A DIFFERENT ROLE AS FAR AS ADVOCACY, AND WE'LL KIND OF TALK ABOUT THAT IN JUST A MINUTE, SO WE REALLY HAVE TO THINK ABOUT HOW CAN WE USE THOSE FUNDS TO THE BEST OF OUR ABILITY AND OUR IHS FACILITIES AND HOW DO WE PROVIDE ENOUGH RESOURCES AND PARTNERSHIPS WITH OUR TRIBES FOR THEM TO BE ABLE TO REACH OUT TO OTHERS TO HELP THEM AS WELL. SO WHEN WE LOOK AT OUR SYSTEM, AND I JUST KIND OF WANT TO GO QUICKLY BECAUSE I KNOW WE HAVE A LOT TO TALK ABOUT, WE HAVE OVER 2,000 IHS TRIBAL AND URBAN INDIAN MENTAL HEALTH AND ALCOHOL PROVIDERS. THAT'S A LOT OF PROVIDERS, BUT WHEN YOU THINK YOU HAVE TWO POWNT 2.2 MILLION IN YOUR POPULATION, THIS IS WHERE THE WAITING LISTS COME IN, LET ALONE GET PAST THE STIGMA TO HAVE SWUB COME SOMEONE COME IN FOR THOSE SERVICES. WE HAVE 12 OF WHAT WE CALL OUR YOUTH REGIONAL TREATMENT CENTERS. ONE JUST OPENED UP IN SOUTHERN CALIFORNIA, AND WE ALSO HAVE ANOTHER ONE THAT IS BEING BUILT IN NORTHERN CALIFORNIA RIGHT NOW NOW. SOME OF THOSE FACILITIES ARE RAN BY TRIBES AND SOME ARE ALSO RAN BY FEDERAL GOVERNMENT. SO WHEN WITH TALKED ABOUT THE DIVISION OF BEHAVIORAL HEALTH, THAT'S WHERE I'M THE DEPUTY DIRECTOR AND DR. COTTON IS THE DIRECT, TO WE HAVE DIRECTOR, WE HAVE A HUGE UMBRELLA. WHEN I STARTED THERE IN 2013, I WANT TO SAY WE HAD SIX EMPLOYEES. AS OF NEXT MONDAY, WE WILL HAVE 29 EMPLOYEES. SO WE HAVE GROWN TREMENDOUSLY. INITIATIVES THAT I'M GOING TO TALK ABOUT NEXT, BECAUSE IHS HAS RECOGNIZED THAT TO RUN THE INITIATIVES, WE NEED TO HAVE A REPRESENTATIVE WITHIN THE OFFICE THAT IS RUNNING THAT. BUT ONE OF THE PIECES THAT'S IMPORTANT TO TALK ABOUT WITH THE INITIATIVES IS SOME OF THE INITIATIVES ARE MANNED OR WOMANED BY ONE PERSON. NATIONALLY. SO IT DOESN'T MEAN WE HAVE A WHOLE STAFF OF 29 PEOPLE DO ONE INITIATIVE. WE HAVE ONE PERSON THAT'S STILL TRYING TO ASSIST EVERYONE. SO THAT'S PART OF WHY WE REALLY LOOK FOR OUR PARTNERSHIPS TO LOOK AT HOW WE CAN HAVE THE BIGGEST IMPACT. SO WHAT WE FOCUS ON IS POLICY DEVELOPMENT, PROGRAMMING, BUDGET FORMULATION, OUR SUPPORT AND RESOURCES, OUR SPECIAL NUSHTIVES, AND THEN WE HAVE SOME GRANT FUNDING THAT WE'RE ABLE TO PUT OUT FOR TRIBES, TRIBAL ORGANIZATIONS AND URBAN INDIAN ORGANIZATIONS. SO WITH THE DIVISION OF BEHAVIORAL HEALTH COMING BACK TO OUR 12 IHS AREAS THAT WE TALKED ABOUT, EACH AREA HAS A BEHAVIORAL HEALTH CONSULTANT, AND THAT BEHAVIORAL HEALTH CONSULTANT IS REALLY THE GO-TO BETWEEN INDIAN HEALTH SERVICE HEADQUARTERS AND DIRECT SERVICES ON THE GROUND FOR THAT AREA. SO AGAIN, THAT'S A PARTY OF ONE, TAKING CARE OF AN ENTIRE AREA. HOWEVER, THOSE ARE FOLKS THAT PROVIDE US ADVICE, THAT ADVISE US ON WHAT'S NEEDED IN THE AREA, AND THEY ARE LITERALLY INVALUABLE. IT IS JUST AMAZING TO WORK WITH THEM. WHEN PEOPLE ASK FOR SERVICES IN A PARTICULAR AREA, WE IMMEDIATELY CONNECT THEM WITH A BEHAVIORAL HEALTH COP SUL CONSULTANT, THEY'RE JUST AN AMAZING PARTNER THAT WE HAVE. SO SOME OF OUR SPECIAL INITIATIVES THAT WE HAVE AND SOME OF THE THINGS THAT WE'VE EVEN TALKED HERE AT OUR COMMITTEE MEETING IS FOCUSED ON TRAUMA INFORMED CARE. INDIAN HEALTH SERVICES HAS TAKEN A STANCE THAT THERE IS INTERGENERATIONAL AND HISTORICAL TRAUMA THAT HAS IMPACTED NOT ONLY AMERICAN INDIA AND ALASKA NATIVES BUT MANY POPULATIONS. SO PART OF WHAT WE DO NOW, WHETHER IT'S RESOURCES, TREEN TERRAINING, OR ANY TYPE OF REEFLS AS REFERRALS AS WE'RE LOOKING AT HOW DO WE ADDRESS TRAUMA INFORMED CARE. WE HAVE TWO MAJOR PROGRAMS. ONE IS FAMILY SPIRIT. FAMILY SPIRIT IS A PROGRAM THAT IS CULTURALLY BASED AND IT IS CONNECTED WITH THE JOHNS HOPKINS CENTER, AND IT HAS BEEN FABULOUS. BASICALLY WHAT HAPPENS IN A NUTSHELL IS THEY TAKE COMMUNITY -- I'LL CALL THEM CHAMPIONS THAT HAVE BEHAVIORAL HEALTH BACKGROUNDS, AND SOME ARE REALLY MAYBE ASSOCIATE DEGREE OR COULD BE A LAY PERSON, AND THEY'RE AN INDIVIDUAL THAT WILL THEN GO INTO A HOME HEALTH CENTER WITH A FAMILY AND IT'S USUALLY WITH A MOM OR A DAD THAT HAS A CHILD THAT'S BIRTH TO 3. AND THEIR PURPOSE IS TO BUILD BETTER RELATIONSHIPS TO TEACH THOSE PARENTS HOW TO PARENT, HOW TO TAKE CARE OF THM THEMSELVES, HOW TO LOOK FOR SYMPTOMS EARLY ON, HOW TO REACH OUT AND MAKE THOSE REFERRALS. AND THIS HOME BASED CARE, IT'S PHENOMENAL. SO IT'S ONE OF THE PIECES THAT WE'VE REALLY TRIED TO TAKE AND PUSH FORWARD BECAUSE, AGAIN, IT'S TAKING FUNDS FROM THE NATIONAL LEVEL AND REALLY GETTING THEM DOWN ON THE GROUND SO WE CAN MAKE AN IMPACT AND IMPROVE THE HEALTH OF OUR YOUNGER GENERATIONS. THE NEXT ONE WE HAVE IS PEDIATRIC INTEGRATED CARE COLLABORATIVE, AND THIS IS ONE OF OUR NEW INITIATIVES, AND THIS PARTICULAR INITIATIVE IS REALLY TALKING ABOUT INTEGRATING MENTAL HEALTH OR BEHAVIORAL HEALTH WITHIN PRIMARY CARE. AND WE'RE LOOKING AT THE PEDIATRIC POPULATION IN GENERAL, AND RIGHT NOW WE HAVE 10 PROJECTS, PILOT PROJECTS THAT ARE JUST GETTING OFF THE GROUND AND GETTING STARTED, AND WE'RE LOOKING FORWARD TO WHAT THOSE PILOT PROJECTS ARE GOING TO TELL US SO WE CAN ALSO TAKE THAT INFORMATION AND LOOK FORWARD INTO HOW WE'RE MOVING THAT OUT IN THE UPCOMING YEARS. WE HAVE THE GENERATION INDIJ NU WHICH CAME FROM THE OBAMA ADMINISTRATION, AND WITH THAT, WE HAVE OVER 100 PROJECTS THAT WE HAVE FUNDED RIGHT NOW THAT ARE REALLY LOOKING AT IMPROVING OUR YOUTH, THEIR RESILIENCE, LOOKING AT HOW DO WE IMPROVE THEIR SELF-ESTEEM, HOW DO WE GET THEM ACTIVE, HOW DO WE GET THEM TO FIND THEIR OWN VOICE AND BE LEADERS WITHIN THEIR COMMUNITY. THE SPRING PIECE WE'VE ADDED IS THE CHILDREN AND MENTAL HEALTH SERVICES WITHIN SCHOOLS, SO HOW I HAD MENTIONED THAT THERE ARE BIE, BUREAU OF INDIAN EDUCATION SCHOOLS, AND THERE'S ALSO BIA, BUREAU OF BUREAU OF INDIAN AFFAIRS THAT PUTS IN SOME FUNDS FOR SOME SCHOOLS. WHAT INDIAN HEALTH SERVICE HAS DONE IS A MEMORANDUM OF UNDERSTANDING AND AGREEMENTS WITH THE SCHOOLS TO BE ABLE TO INCREASE BEHAVIORAL HEALTH IN THE SCHOOLS. SO WHAT THEY'RE DOING AT THE LOCAL LEVEL, IF THERE'S IHS SERVICE LEVELS THAT CAN REACH OUT TO THOSE SCHOOLS, THEY'RE MAKING A CONTRACTUAL AGREEMENT TBEEN BETWEEN THE SCHOOL AND THE IHS SERVICE UNIT SO PROVIDERS CAN GO INTO THE SCHOOLS AND PROVIDE DIRECT CARE AT A SCHOOL. I'LL KIND OF TALK A LITTLE BIT MORE ABOUT THAT AS WELL. THEN THE LAST ONE UNDER OUR YOUTH FOCUS IS THE BOYS AND GIRLS CLUB OF AMERICA AND THOSE ARE OUR NATIVE SERVICES. AND IHS HAS PROVIDED OVER $100 MILLION TO -- I BELIEVE IT'S 11 BOYS AND GIRLS CLUBS OF AMERICA AND THEY HAVE JUST TAKEN OFF. THEY HAVE BEEN AMAZING. AND WE HAVE A NATIVE YOUTH LEAD, MINETTE GLENDA, WHICH IS PART OF OUR STAFF, WHO JUST WENT TO ONE OF THE RECENT BOYS AND GIRLS CLUBS OF AMERICA MEETINGS AND IT WAS AMAZING. SHE PUT SOME OF HER VIDEOS ON OUR DIVISION OF BEHAVIORAL HEALTH FACEBOOK, AND IT LITERALLY HAD THE MOST LIKES THAT WE'VE HAD IN THE LAST TWO YEARS. PEOPLE LOVE SEEING THE VIDEOS OF THE YOUTH. THEY LOVE SEEING THE ACTIVITIES. THEY LOVE SEEING THE YOUTH BE EMPOWERED. SO THAT'S ONE OF THE INVESTMENTS THAT INDIAN HEALTH SERVICE HAS BEEN VERY EXCITED ABOUT. SO HERE'S ONE OF THE PICTURES OF DR. COTTON, WHO'S IN THE MIDDLE, AND THIS IS WHEN THEY WERE SIGNING ONE OF THE MOUs AND REALLY, THEY'RE TRYING TO BUILD THOSE PARTNERSHIPS, SO IT WILL BE INTERESTING TO SEE HOW MANY MORE BOYS AND GIRLS CLUBS WILL BE OPEN. I HAVE TO SAY EVEN MY TRIBE OPENED A BOYS AND GIRLS CLUB SO HERE I AM IN D.C., YEA! BECAUSE IT'S BEEN NEEDED. ACTUALLY WHEN I DID MY DISSERTATION ON MY TRIBE, THAT'S ONE OF THE THINGS THAT WAS MY RECOMMENDATION FOR MY DISSERTATION. SO IT WAS VERY EXCITING TO SEE THAT HAPPEN. SO SOME OF OUR BEHAVIORAL HEALTH GRANTS THAT WE HAVE, WE HAVE A LOT, SO IT'S BEEN AMAZING HOW MUCH FUNDS THAT THE DIVISION OF BEHAVIORAL HEALTH HAS SENT OUT TO THE TRIBES. SO WE HAVE SOME FUNDS THAT SUPPORT OUR SUBSTANCE ABUSE AND SUICIDE PREVENTION EFFORTS. WE HAVE SOME FUNDS THAT SUPPORT DOMESTIC VIOLENCE PREVENTION AND HERE WE HAVE OUR BEHAVIORAL HEALTH INTEGRATION OR WE CALL IT OUR BH2I. WE HAVE THE ZERO SUICIDE INITIATIVE AND I'M GULF COAST GOING TO TAL K A LITTLE ABOUT EACH OF THESE, URBAN INDIAN HEALTH OUTREACH, PREVENT, ALCOHOL RELATED DEATHS, AND FINALLY OUR YOUTH REGIONAL TREATMENT CENTER AFTERCARE. SO GOING THROUGH THESE VERY QUICKLY, OUR SUBSTANCE ABUSE AND SUICIDE PREVENTION INITIATIVE WAS ESTABLISHED IN 2009, AND RIGHT NOW WE ACTUALLY HAVE 175 TOTAL PROJECTS TO A TOTAL OF $27.9 MILLION. THEY ARE ON A FIVE-YEAR FUNDING CYCLE. WE HAD A PILOT PROJECT INITIATIVE IN 2009 AND NOW THE DEMONSTRATION PROJECT HAS MOVED INTO AN ACTUAL INITIATIVE, SO THEY HAVE EVALUATION THAT THEY'RE WORKING ON, WE'LL HAVE REPORTS, WE'LL BE ABLE TO HAVE OUTCOMES, SO WE'RE REALLY LOOKING FORWARD TO WHAT THE DATA IS GOING TO TELL US AND HOW WE CAN SEE WHAT THE OUTCOMES ARE OF THE INITIATIVE AS IT ROLLS OUT. SO THIS ONE DOES HAVE FOUR PURPOSE AREAS, AND TO BASICALLY SAY IT IN A NUTSHELL, AND I MADE SURE I LEFT A SLIDE SO PEOPLE THIS FOR REFERENCE LATER, WE ARE MEETING THE TRIBES WHERE THEY'RE AT, SO SOME TRIBES ARE REALLY IN THE ORGANIZATIONAL STRATEGIC PLANNING EFFORT SO WE WANTED TO MAKE SURE THAT TRIBES THAT NEEDED THAT HAD THAT PARTICULAR FUNDING STREAM AND WEREN'T COMPETING AGAINST TRIBES THAT WERE ALREADY AT THE PREVENTION PIECE. SO THEN WE HAVE THOSE WHO ARE LOOKING AT SUICIDE PREVENTION, INTERVENTION AND POSTVENTION VERSUS SUBSTANCE ABUSE PREVENTION AND AFTERCARE. SO TRIBES MAY HAVE BOTH BUT THI MAY THEY MAY HAVE ONLY APPLIED TO ONE BUT WE WANTED TO BE ABLE TO PROVIDE OPTIONS FOR TRIBES SO WHERE THEY FELT THEY REALLY NEEDED TO START IS WHERE WE COULD MEET THEM. AND THEN THE FOURTH AREA IS THE GENERATION INDIGENOUS, AND THAT'S VERY YOUTH-FOCUSED, AND ACTUALLY A LOT OF THE TRIBES THAT HAVE THOSE FUNDS HAVE ACTUAL YOUTH COUNCILS THAT THEY STARTED SO IT'S KIND OF EXCITING TO SEE THAT HAPPEN. AS FAR AS THE DOMESTIC VIOLENCE PREVENTION, THIS CAME ONE YEAR LATER, AND THIS WAS IN 2010 WHEN IT STARTED AS A PILOT PROJECT. AND NOW WE HAVE 83 PROJECTS TO THE TUNE OF $11.2 MILLION AND AGAIN, THIS IS ON A FIVE-YEAR FUNDING. IT IS SET UP VERY MUCH THE SAME WAY AS FAR AS THE EVALUATION AS THE SUBSTANCE ABUSE AND SUICIDE PREVENTION. AND THIS ONE HAS TWO AREAS. SO THE TWO SPECIFIC AREAS, ONE IS DOMESTIC VIOLENCE AND SEXUAL ASSAULT AND THEN THERE'S A PREVENTION, ADD COVOA KA ADD VO KEY ADVOCA CY -- I FOUND THAT OUT MY LAST TIME I WAS TALKING ABOUT THIS FOR FORENSIC HEALTH SERVICE, FOR ME, THE LAY PERSON WAY OF SAYING IT IS REALLY WHEN THERE IS SOMEONE THAT HAS A NEED THAT HAS BEEN SEXUALLY ASSAULTED THAT NEEDS TO HAVE AN EXAM WHERE OUR PROVIDERS ARE TRAINED IN THE FACILITY TO BE ABLE TO DO THAT EXAM, TO BE ABLE TO DOCUMENT THE EXAM, TO BE ABLE TO WORK WITH LAW ENFORCEMENT TO ENSURE THAT THE PROCESS OF EVIDENCE IS MOVED FORWARD, SO, THEREFORE, IF THERE IS A PROSECUTION, THAT WE CAN ENSURE THAT WE HAVE THAT FOR THE LAW ENFORCE M. ENFORCEMENT. ONE OF THE PIECES WE'VE FOUND THROUGH THE FORENSIC HEALTHCARE SERVICE IS THAT IN RURAL POPULATIONS, IF AN EVENT HAPPENS AND THERE IS SOMEONE THAT HAS BEEN SEXUALLY ASSAULTED, THEY HAVE TO GO MILES, MILES AWAY FOR AN EXAM. AND OFTENTIMES THEY'RE NOT WILLING TO DO THAT. SO PART OF THIS INITIATIVE IS TO REALLY TRAIN OUR FORENSIC HEALTH PROVIDERS AND SO WE HAVE ACTUALLY DEVELOPED A FORENSIC HEALTHCARE WEBSITE ON IHS AND IT HAS ALL OF THIS FREE TRAINING MODULES THAT FOLKS CAN GO TO, AND AGAIN, THAT'S FOR ALL IHS TRIBAL URBAN ORGANIZATIONS AND SOME OF THEM ARE ALSO IN-PERSON TRAININGS BUT THERE'S A LOT OF ONLINE TRAININGS THAT ASSIST WITH FORENSIC HEALTHCARE. SO ON OUR BEHAVIORAL HEALTH INTEGRATED INITIATIVE, THIS IS A NEW ONE THAT JUST CAME OUT. IT LITERALLY STARTED SEPTEMBER OF 2017, SO OUR STAFF WAS EXTREMELY BUSY BECAUSE I BELIEVE WE FOUND OUT IN JULY THAT WE WERE PUSHING THIS MONEY OUT, AND SO WE HUSTLED AND MADE SURE THAT WE WERE ABLE TO PUT OUT $6 MILLION FOR 12 AWARDS SO EACH AWARDEE GOT $500,000 A YEAR FOR A THREE-YEAR TERM, AND IT'S REALLY FOCUSING ON INTEGRATING, LIKE WE TALKED ABOUT EARLIER, HEALTH WITHIN OUR PRIMARY CARE, AND WE'RE LOOKING FORWARD TO SEEING WHAT OUR EVALUATION PIECES LOOK FROM THIS SO WE CAN MAKE OUR NEXT STEPS FORWARD. SO WITH THAT, AGAIN YOU SEE HERE IN NOVEMBER -- THESE WERE ALL HAPPENING AT THE SAME TIME -- THE ZERO SUICIDE MONEY CAME UP, SO WE WERE ABLE TO PUT OUT FUNDS FOR THE ZERO SUICIDE, AND IT'S REALLY TO REDUCE THE RISK OF SUICIDE FOR ALL INDIVIDUALS. THIS ISN'T ABOUT SCREENING ONE INDIVIDUAL OR IMPROVING SCREENING. THIS IS ABOUT A COMMUNITY RESPONSE. SO THIS IS LOOKING AT HOW DO WE REDUCE SUICIDE RATES WITHIN AN ENTIRE COMMUNITY. AND SO WHAT WE'VE DONE IS WE'VE FUNDED EIGHT SITES TO IMPLEMENT THE ZERO SUICIDE MODEL, SO EACH SITES WILL HAVE $400,000 FOR THE NEXT THREE YEARS TO BE ABLE TO PUT THAT MONEY TO USE. SO WE STARTED WITH 10 PILOT SITES AND THEN OF THOSE 10, EIGHT SAID WE'RE READY TO ACTUALLY IMPLEMENT THIS MODEL WITHIN OUR COMMUNITY. SO THAT'S KIND OF WHERE WE'RE AT RIGHT NOW. SO AS FAR AS OUR BEHAVIORAL HEALTH GRANTS, FOR THE URBAN INDIANS, ONE OF THE PIECES THAT'S REALLY IMPORTANT IS THAT WE PUT OUT $75,000 TO THE NATIONAL COUNCIL ON URBAN INDIAN HEALTH, AND THAT'S TO FOCUS THE INCREASE OF RAISING NATIONAL AWARENESS AND VISIBILITY OF BEHAVIORAL HEALTH WITHIN URBAN INDIAN HEALTH CENTERS. THERE ARE NOT A LOT, THERE WAS 34 URBAN INDIAN HEALTH CENTERS, SO IF YOU THINK ABOUT THERE'S ONLY 34, WE'VE GOT TO RAISE THAT AWARENESS. MANY TRIBAL FOLKS DON'T EVEN KNOW WHERE TO GO FOR URBAN INDIAN HEALTH CENTER OR WHAT SERVICES ARE OFFED, AND SO PART OF THAT IS RAISING THAT AWARENESS AND INCREASING THEIR PARTNERSHIPS TO HELP RAISE THAT AWARENESS TOO. SO ONE OF THE VERY DIFFICULT PIECES FOR ME TO TALK ABOUT PERSONALLY IS OUR PREVENTING ALCOHOL-RELATED DEATHS. THIS CAME FORTH BECAUSE A LOT OF SITUATIONS THAT WERE OCCURRING IN PARTICULAR IN THE NAVAJO COUNTRY, WHERE FOLKS WERE ACTUALLY DYING ON THE STREETS FROM ALCOHOL-RELATED DEATHS. IT WOULD BE FOLKS WHO WERE INTOXICATED AND LITERALLY FREEZING TO DEATH, BECAUSE THERE WEREN'T DETOX CENTERS, BECAUSE THERE WEREN'T SERVICES THAT WERE PROVIDED, SO IHS RESPONDED WITH SOME FUNDS AND WE HAVE AWARDED $500,000 TO A TRIBE IN OUR GREAT PLAINS AREA AND ALSO $1.5 MILLION AND WE PUT TO THE NAVAJO AREA BECAUSE IT WILL BE FOCUSED ON THE ENTIRE NAVAJO AREA, AND THAT PROJECT STARTED IN SEPTEMBER OF 2017, SO AS YOU CAN SEE, SEPTEMBER, NOVEMBER, WE WERE BUSY LITTLE BEES, MAKING SURE WE GOT ALL OF THESE FUNDS OUT TO THE TRIBES. SO THE FOCUS IS REALLY PROVIDING DETOXIFICATION SERVICES FOR THAT COMMUNITY SO WE CAN LOOK AT REALLY PREVENTING THE UNNECESSARY DEATHS. SO THEN WE GO TO ONE OF THE UPLIFTING GRANT PROGRAMS THAT I'M EXCITED ABOUT, OUR REGIONAL TREATMENT CENTER AFTERCARE. SO WE HAVE AWARDED ONE ALREADY, THE IHS YRTC, AND WE ARE WORKING ON -- EXCUSE ME, WE HAVE AWARDED THE TRIBAL BUT WE'RE WORKING ON THE IHS YRTC, WHICH IS THE FEDERAL ONE, AND THEY WILL GET $810,000 FOR 3 YEARS, WHICH IS A TOTAL OF $1.6 MILLION FOR THE TWO AWARDS, AND THIS IS A NEW INITIATIVE THAT WE BROUGHT FORTH FORTH. WE REEK REC. NIEZWE RECOGNIZE OUR YOUTH, O NCE WE LEAVE THE TREATMENT CENTER AND MOVE BACK HOME, WE LOSE THEM. WE DON'T HAVE CASE MANAGEMENT TO FOLLOW THEM. WE'RE NOT SURE HOW THEY'RE GETTING SUPPORTED SERVICES. SO WE HAD TO FIGURE OUT A WAY OF DOING THIS. SO PART OF OUR AFTERCARE IS THAT WE HAVE TWO FACILITIES THAT ARE GOING TO PILOT HOW THEY'RE GOING TO FOLLOW FOLKS, HOW THEY'RE GOING TO EVALUATE THAT, AND THEN WE CAN LOOK AT REALLY WHAT THE OUTCOMES ARE OF THE TREATMENT, AND THEN THEY WILL SHARE THAT WITH OUR OTHER YRTCs TO BE ABLE TO IMPLEMENT THAT AS WELL. SO NOW I'M GOING TO MOVE INTO HOW IHS HAS TAKEN ALL OF THESE INITIATIVE FUNDS AND KIND OF FUNNELED IT THROUGH, IF YOU WILL, OUR TELEBEHAVIORAL HEALTH CENTER OF EXCELLENCE. THE IT'S RANIT'S RAN BY DR. CHRIS FOHR, HE AND HIS STAFF PROVIDE TELEEDUCATION AND TELEHEALTH INCLUDING TECHNICAL ASSISTANCE FOR ALL OF OUR 12 IHS AREAS. AGAIN, THAT IS AVAILABLE FOR IHS FEDERAL FACILITIES, OUR TRIBAL FACILITIES, AND OUR URBAN PROVIDERS. SO THEY ALL CAN COME IN ON ANY OF THE PRESENTATIONS AND TAKE CONTINUING EDUCATION. SOME OF THEM HAVE REALLY TAKEN ADVANTAGE OF OUR MANAGING NON-CANCEROUS CARE TRAINING, WE CALL IT OUR ESSENTIAL TRAINING, AND SO THEY PROVIDE TELEBEHAVIORAL HEALTH SERVICES RIGHT NOW IN NINE OF THE IHS AREAS, AND SOME OF THOSE ARE DONE BETWEEN IAAs, SO WITH THAT, WITH IAA INTERAGENCY AGREEMENT, WHAT WE'VE TRIED TO DO IS HE'S CONNECTED WITH THE UNIVERSITY OF NEW MEXICO, WHO HAS REACHED OUT TO A LOT OF OUR CONTINUING EDUCATION FOLKS FOR WHETHER IT'S PSYCHOLOGY OR SOCIAL WORK OR THE MEDICAL FIELD, AND THEY PROVIDE THE CEUs OR THE CMEs FOR OUR PROVIDERS. AND THEY'RE ABLE TO UTILIZE THOSE CONTRACTS SO THEY CAN REACH OUT TO A VARIETY OF AREAS. I DECIDED TO PUT A MAP -- I'M A VERY VISUAL PERSON -- OF WHERE WE ARE. YOU'LL NOTICE DOWN IN THE SOUTH, WE HAVE A WHOLE LOT OF THEM BECAUSE THEY'RE SITTING DOWN THERE. WE'RE STARTING TO SPREAD OUT. WE DO HAVE A LOT OF REQUESTS TO ADD ADDITIONAL SITES. THE ISSUE HAS BEEN FUNDS. SO AGAIN, WE'RE HAVING TO BE CREATIVE OF HOW DO WE BUILD THIS, HOW DO WE BUILD OUR PARTNERSHIPS SO WE CAN GET EITHER TELEHEALTH EQUIPMENT THERE ON SITE AND BE ABLE TO GET PROVIDERS AND/OR HIRE THE PROVIDERS AND BE ABLE TO HAVE THEM ON BOARD TO PROVIDE SERVICES. SO IF WE LOOK AT THE SERVICES PROVIDED, WHEN WE LOOK AT OUR PATIENTS SEEN JUST LIKE TELEBEHAVIORAL HEALTH, THEY SAW OVER 8,000 PATIENTS AND THIS WAS JUST AN FY17. THOSE ARE 8,000 PATIENTS THAT WOULDN'T HAVE BEEN SEEN. SO THERE'S A PART OF US THAT WERE LIKE, YEA, WE'RE ACTUALLY INCREASING THE ACCESS TO CARE THROUGH THIS. WHEN WE LOOK AT THE NUMBER OF HOURS THAT THEY'VE PROVIDED SERVICES TO, OR WE LOOK AT THE AMOUNT OF SITES THAT THEY'VE PROVIDED SERVICES TO, IT'S VERY EXCITING TO SEE THAT WE'RE STARTING TO EXPAND THAT. WHAT I WAS MORE EXCITED ABOUT PERSONALLY WAS THE TYPES OF SERVICE, THEY SAW MORE CHILDREN THAN ANY OTHER POPULATION, SO WHEN WE'RE THINKING ABOUT REACHING OUT TO OUR YOUTH, AND WE'RE TALKING ABOUT BREAKING THROUGH THE STIGMA, OUR CHILDREN ARE LESS -- ARE MORE LIKELY TO COME FOR SERVICES BECAUSE THEY DON'T KNOW ALL THE STIGMA AS SOME OF OUR ADULTS. THOSE ARE OUR CHURN THAT WE'RE HOPING TO CHANGE THE FUTURE, SO THAT WAS REALLY EXCITING. THEN THE OTHER PIECE, OF COURSE,ARY NEAR AND DEAR TO MY HEART WAS COUNSELING, AND 21% OF IT WAS FOR ADDICTION. AND THEN WE HAVE 18% FOR ADULT SO IT'S INTERESTING THAT OUR CHILDREN ARE ALMOST TWICE AS MUCH AS OUR ADULTS FOR COMING IN FOR SERVICE. SO I JUST WANTED TO PROVIDE JUST A QUICK OVERVIEW OF WHAT WE DO FOR TELEEDUCATION. SO THEY DO SUPPORT A LOT OF OUR EDUCATIONAL WEBINARS AND I KNOW AT OUR LAST COMMITTEE MEETING, WE WERE TALKING A LITTLE ABOUT WHAT ARE SOME OPTIONS OF HOW DO WE RAISE AWARENESS OF THIS COMMITTEE, HOW DO WE GET OUT TO PROVIDERS. THIS WOULD BE ONE WAY THAT INDIAN HEALTH SERVICE COULD PARTNER IN PROVIDING THOSE EDUCATIONAL WEBINARS OUT TO OUR PROVIDERS. WHEN WE LOOK AT CONTINUING EDUCATION CREDIT, IF YOU GO DOWN TO THE THIRD BULLET, WE VL 336 CONTINUING 4,336 CONTINUING EDUCATION HOURS. IF YOU THINK ABOUT THAT I COULD DO THESE WHERE I AM REMOTE, IT WOULD SAVE ME TREMENDOUSLY, WHICH MEANS I CAN PROVIDE MORE PATIENT CARE. SO WHEN WE THINK ABOUT THOSE TYPE OF WAYS OF BEING INNOVATED, IT'S VERY EXCITING TO SEE HOW WE'RE ABLE TO MAKE A CHANGE. SO THEN I KIND OF -- THIS IS REALLY WHERE I WANTED TO GO WITH THE CONVERSATION. ONE OF THE THINGS WE'VE STARTED IS OUR INDIAN CHILDREN'S PROGRAM AND WE CALL IT OUR ICP, WE'RE ALL ABOUT ACRONYMS AT INDIAN HEALTH SERVICE SO I APOLOGIZE UP FRONT. WE DO PROVIDE TRAINING AND HERE'S THREE AREAS THAT I FELT WERE VERY IMPORTANT TO TALK ABOUT. ONE IS OUR FOCUS ON AUTISM. WE DO HAVE SIX SERIES ON AUTISM AND IT DOESN'T SEEM LIKE A WHOLE LOT, THEY'RE STILL WORKING ON SOME MORE AND ACTUALLY WE HAVE SOME IN THE PILOT PHASE RIGHT NOW THAT WE WERE JUST HAVING A DISCUSSION ABOUT YESTERDAY.& SO WE HAVE A SIX-SERIES WEBINAR ON AUTISM FOR OUR PROVIDERS TO HAVE AWARENESS, AND THE REASON WE TALK ABOUT HOW IMPORTANT THAT IS IS BECAUSE IF THE PROVIDERS CAN'T GET AWAY TO ACTUALLY GO FOR AUTISM-SPECIFIC TRAINING, AT LEAST THEY'RE ABLE TO GET IT REMOTELY. WE ALSO HAVE FIVE SERIES ON FETAL ALCOHOL SPECTRUM DISORDERS, AND MANY OF OUR PROVIDERS HAVE TALKED A LOT ABOUT WHEN FOLKS ARE COMING IN, AND THEY'RE STARTING TO RECOGNIZE SYMPTOMATOLOGIES, THAT'S WHEN THEY'RE GOING, OH, MAYBE I REALLY NEED TO REFER SOMEONE OUT FOR A SPECIALIST. MAYBE I NEED TO LOOK FOR A DEVELOPMENTAL PEDIATRICIAN. SO THEY'RE STARTING TO HAVE MORE CONVERSATIONS, THEY'RE STARTING TO HAVE MORE AWARENESS, AND THAT'S EXACTLY WHAT WE'RE TALKING ABOUT WITH OUR TELEBEHAVIORAL HEALTH IS, RAISING THAT AWARENESS, SO THOSE FLAGS ARE RAISED RIGHT AWAY SO WE'RE NOT WAITING YEARS DOWN THE ROAD FOR SOMEBODY TO BE REFERRED OFF FOR CONFIRMATION OF A DIAGNOSIS. AND THEN THE LAST PIECE IS FOR OUR ICP PEDIATRIC NEUROPSYCHOLOGICAL CONSULTATIONS CONSULTATIONS. WITH THAT, WHAT WE'VE SET UP ARE CONSULTATIONS THAT WE PROVIDE TO ALL OF OUR PROVIDERS, AGAIN, THIS IS TO INDIAN HEALTH SERVICE, OUR TRIBAL AND OUR URBAN PROVIDERS, AND SO THOSE PROVIDERS CAN ACTUALLY REQUEST A CONSULTATION FOR ANY PATIENT BETWEEN THE AGE OF 1 AND 23 YEARS OLD. WE'RE HAVING CONVERSATIONS ABOUT EXPANDING THAT AGE GROUP. BUT THEY ARE SCHEDULED EVERY SECOND AND FOURTH FRIDAY OF THE MONTH, THEY HAVE A FOUR-HOUR BLOCK, AND THEY ASK FOR CONSULTATION FOR 15 MINUTES, AND SO WITHIN THAT CONSULTATION, WHAT WILL HAPPEN IS THEY WILL ALREADY PRE-FILL OUT A REFERRAL SHEET FOR THE CONSULTATION, AND THEN THE PROVIDER WILL HAVE THAT TO BE ABLE TO LOOK AT IT AND KIND OF HAVE SOME THOUGHTS BEFORE THEY HAVE THEIR CONSULTATION, AND THAT'S REALLY TO HELP THEM CLARIFY AND DIFFERENTIATE DIAGNOSES SO THEY CAN PROVIDE BEHAVIORAL HEALTH INTERVENTIONS THAT ARE NOT ONLY FOR THE INDIVIDUAL THAT'S 1 TO 24, BUT ALSO FOR THE FAMILY. SO ONE OF THE PIECES THAT WE'VE NOTICED WITH TELEBEHAVIORAL HEALTH IS THIS HAS REALLY HELPED THE FAMILIES ALSO DEAL WITH A DIAGNOSIS BEING GIVEN. ALSO DEAL WITH THE STIGMA THAT COMES WITH THAT. THE EXTRA STRESS. THE CONCERN ABOUT WHAT DO I DO NOW, I DON'T KNOW WHAT RESOURCES I HAVE. SO THIS IS PART OF THE PIECES THAT THEN OUR PRIMARY CARE NEEDS TO STEP IN AND PROVIDE THOSE RESOURCES AND PROVIDE THE FOLLOW-UP. SO FOR ONE OF THE PIECES THAT WE'RE LOOKING AT, IS THAT THE MORE THAT AT HEADQUARTERS WE CAN IDENTIFY THOSE RESOURCES AND WE CAN BUILD OUR WEBSITE SO WE HAVE THOSE RESOURCES READILY AVAILABLE FOR ANYONE ELECTRONICALLY, THE BETTER WE CAN PREPARE OUR PROVIDERS TO DEAL WITH ANY DIAGNOSES THAT ARE COMING, TO DEAL WITH QUESTIONS AND BE COMFORTABLE WITH REFERRING OUT AS NECESSARY, SO THAT'S KIND OF THE DIRECTION THAT INDIAN HEALTH SERVICE IS MOVING FORWARD WITH. SO WHAT I KIND OF TRIED TO DO, I KNOW THIS SLIDE IS A LITTLE HARD TO SEE, SOME OF OUR CONSULTATION CLINICS, THE MAIN ISSUES HAVE BEEN ON FETAL ALCOHOL SYNDROME, OR SPECTRUM DISORDER, EXCUSE ME, ON AUTISM SPECTRUM DISORDER AND ADHD. IS THAT A SURPRISE TO ANYBODY IN THIS ROOM? NO. BUT WHAT'S EXCITING IS THAT WE'RE ABLE TO FOLLOW THAT, THAT WE CAN SAY, THESE ARE THREE AREAS THAT HAVE BEEN REALLY HOT TOPICS FOR US, AND THEN WE CAN GO DOWN AND WE TALK ABOUT INTELLECTUAL DISABILITY AND LEARNING DISORDERS, WHICH RUN ALONG WITH OUR TBI, THEN WE START TALKING ABOUT OTHER DISORDERS GOING DOWN. SO ONE OF THE PIECES THAT WE'RE REALLY EXCITED ABOUT IS THAT WE'VE ACQUIRED PROVIDERS THAT CAN DO THESE CONSULTATIONS BECAUSE OFTENTIMES WITHIN THE FIELD, WHAT WE HEAR FROM OUR PROVIDERS ARE, I THINK THERE'S SOMETHING GOING ON BUT I'M NOT REALLY SURE WHO I CAN CONSULT WITH. YOU KNOW, I REALLY KIND OF WANT TO TALK THROUGH THIS BUT I DON'T KNOW WHO I CAN DO THAT WITH. SO THROUGH THIS SYSTEM, THEY CAN HAVE A CONSULTATION AND WE CAN ASSIST THEM VERY QUICKLY. SO OVERALL, IF WE LOOK AT HOW WE'RE ACHIEVING THE IHS MISSION, WE REALLY ARE TAKING A HOLISTIC APPROACH. SO COMING BACK TO ONE OF OUR FIRST SLIDES, THIS IS THE COMPREHENSIVE CULTURALLY APPROPRIATE APPROACH THAT WE CAN IMPROVE THE MENTAL HEALTH AND WELLNESS OF AMERICAN INDIAN AND ALASKA NATIVES, AND THAT'S THROUGH OUR YRTCs, ALSO THROUGH OUR SCHOOLS, THROUGH EVEN TRANSITIONAL LIVING. I WAS SO EXCITED TO HEAR ABOUT TRANSITIONAL LIVING WHEN WE WERE HERE IN OUR COMMITTEE MEETING LAST TIME AND THE TIME BEFORE. THAT'S EXTREMELY IMPORTANT. WE ALSO WANTED TO REACH OUT TO THE DETENTION CENTERS, THE TRIBAL POLICE, AND PART OF THAT IS WE CLEARLY RECOGNIZE THAT MANY FOLKS THAT ARE IN OUR DETENTION CENTERS, THAT ARE IN OUR JAILS, THAT ARE IN OUR PRISONS HAVE NOT BEEN DIAGNOSED, HAVE NOT RECEIVED THE HELP THEY NEEDED. AND THAT'S NOT NECESSARILY THE BEST PLACE FOR THEM. ZOO IFSO IF THEY ARE THERE, WHY DON'T WE PROVIDE SERVICE TO THEM SO WHEN THEY DO LEAVE, THEY HAVE AN OPPORTUNITY TO BE MORE SUCCESSFUL. THE OTHER PIECE IS LOOKING AT THE REC. CENTERS, AND THAT'S KIND OF WHERE OUR BOYS AND GIRLS CLUB COMES IN AND OUR OUTPATIENT FACILITIES, AND WITH ALL OF THIS, THIS IS WHERE WE'RE REALLY LOOKING AT THE PERSON, THE FAMILY AND THE COMMUNITY AS A WHOLE. SO ALL OF OUR APPROACHES HAVE ALWAYS TRIED TO BE HOLISTIC, AND CULTURALLY APPROPRIATE. SO ONE OF THE THINGS I WANTED TO LEAVE YOU ALL WITH IS STAYING CONNECTED WITH IHS AND LOOKING AT OUR MISSIONS. SO WE HAVE OUR WEBSITE AT IHS.GOV, WE HAVE LOTS OF PRESENCE ON FACEBOOK NOW, SOCIAL MEDIA IS THE THING, IT'S HILARIOUS WHEN I'M TALKING ABOUT -- PEOPLE HIRING, THEY'RE LIKE, O I GOT MY JOB OFF SOCIAL MEDIA. I'M LIKE, REALLY? I'M NO A MILLENNIAL SO SOME OF THAT WAS A LITTLE DIFFERENTLY TO ME. WE DO HAVE PIECES ON YOUTUBE, WE ARE NOW ON TWITTER AND WE'RE EVEN ON LINKEDIN. SO WE'VE KIND OF STRETCHED OUT, IT'S A LITTLE BIT DIFFERENT FOR THE FEDERAL GOVERNMENT TO SAY WE'RE GOING TO BE ON ALL OF THESE SOCIAL MEDIA NETWORKS, HOWEVER, WE REALIZE WE'VE BUILT SOME FABULOUS PARTNERSHIPS AND SOME OF OUR PARTNERS HAVE BEEN ABLE TO FIND OUT ABOUT INITIATIVES AND PROGRAMMING JUST THROUGH THOSE MEANS. THEN LASTLY I JUST LEFT MY CONTACT INFORMATION BECAUSE I KNOW WE DO SHARE THE SLIDE DECK SO IF ANYONE WANT TODAY REACH OUT DIRECTLY TO ME, YOU WOULD HAVE IT. SO THANK YOU. [APPLAUSE] YES, MA'AM. >> I'M DIANA BIANCHI. THANK YOU FOR THE PRESENTATION. I JUST WONDERED HOW ACCESSIBLE EITHER MOBILE PHONES ARE OR COMPUTERS ARE TO PEOPLE IN RURAL AREAS IN THE TRIBAL COMMUNITIES. CAN YOU GIVE KIND OF AN OVERVIEW COMMENT ON THAT? BECAUSE THAT COULD BE A CHALLENGE OR IT COULD BE A GREAT OPPORTUNITY, ESPECIALLY FOR THE REMOTE TELECONSULTATIONS. >> EXCELLENT QUESTION. THANK YOU. IT'S ACTUALLY KIND OF FUNNY, BECAUSE MOST YOUTH HAVE A PHONE MORE THAN THEY HAVE A COMPUTER. SO SOME OF THE STATISTICS WE WERE WORKING ON, WE WERE WORKING WITH FOLKS FROM TEXT TALK ACT, LOOKING AT THE MENTAL HEALTH APPLICATION, AND THEY WERE ABLE TO IDENTIFY WITHIN RURAL COMMUNITIES, MOST OF THE YOUTH WILL HAVE ACCESS TO A SMARTPHONE OF SOME SORT. WHEN IT COMES TO THE COMPUTERS, MOST OF THE YOUTH WILL USE COMPUTERS THAT ARE EITHER AT THE SCHOOL, SOME DO HAVE THEM AT THE HOMES. THERE ARE SOME TRIBE AND TRIBAL COMMUNITIES THAT THEY HAVE VERY LIMITED ACCESS TO ANY KIND OF INTERNET. HOWEVER, WHAT HAS BEEN HAPPENING IS TRIBES ARE NOW APPLYING FOR FEDERAL GRANTS TO PROVIDE THAT TYPE OF I.T. INFRASTRUCTURE, SO WE'RE STARTING TO SEE THE NUMBERS GO UP. WHEN WE LOOK AT AREAS THAT ARE REALLY REMOTE, THERE'S SOME IN NAVAJO AREA THAT'S EXTREMELY REMOTE, ALASKA AREA THAT IS EXTREMELY REMOTE, A LITTLE BIT IN THE GREAT PLAINS AREA, SO MORE OF THE DAKOTA AREA THAT ARE REMOTE. OTHER THAN THAT, WE USUALLY HAVE PRETTY GOOD CONNECTION. WHEN IT COMES TO TELEHEALTH, THEY HAVEN'T HAD ANY DIFFICULTIES GETTING IN THE EQUIPMENT THAT'S BEEN NEEDED. THE BIGGER STRUGGLE HAS BEEN HAVING ENOUGH PROVIDERS TO PROVIDE THE HOURS THAT ARE NEEDED. BUT THANK YOU, I HOPE THAT ANSWERED YOUR QUESTION. YES, MA'AM. >> GOOD MORNING. LAURA KAVANAUGH FROM THE HEALTH RESOURCES AND SERVICES ADMINISTRATION IN YOUR BUILDING. THANK YOU SO MUCH FOR THE PRESENTATION. CAN YOU TALK A LITTLE BIT, BUILDING ON YOUR LAST COMMENT, YOUR TELECONSULTATION SERVICES, DO YOU HAVE WAITING LISTS, AND DO THEY HAVE ACCESS TO A MULTIDISCIPLINARY TEAM OR -- CAN YOU TALK A LITTLE MORE ABOUT THAT CONSULTATION? >> YES, YES. >> THANK YOU. >> SO SOMETIMES THERE IS A WAITING LIST BECAUSE IT IS THE SECOND AND THE FOURTH FRIDAY, SO YOU MAY BE WAITING -- WE TRY TO MAKE IT VERY QUICKLY, A SHORT PERIOD OF TIME. WHEN THEY DO SEND IN THAT REFERRAL, THAT'S WHAT CLICKS ON WHICH PROVIDER THAT NEEDS TO GO TO WITH THE SPECIALTY. IF THAT PROVIDER DOESN'T HAVE ALL THE ANSWERS, THEY WILL CONSULT WITH OTHERS BEFORE THEY GET ON THAT CONSULTATION. SO PART OF WHAT WE'RE TRYING TO DO IS BE ABLE TO BRING THAT MULTIDISCIPLINARY TEAM VIEW TO THE CONSULTATION. THERE IS FOLLOW-UP TO THAT, SO IF ALL THE QUESTIONS AREN'T ANSWERED OR THERE'S ADDITIONAL QUESTIONS THAT ARE GENERATED DURING THAT CONSULTATION, THEY'LL SCHEDULE ANOTHER ONE AND BE ABLE TO COME BACK TO THAT. SO WHAT THEY TRY TO MAKE SURE IS THEY'RE ABLE TO ANSWER THOSE QUESTIONS AND THEN FOLLOW THROUGH WITH THE PEOPLE. ANY OTHER QUESTIONS? YES, SIR. >> YOU TALKED EARLIER ABOUT ONE OF YOUR PRIORITIES BEING IMPROVING RESILIENCE AND SELF-ESTEEM AMONG YOUNG PEOPLE. IN LIGHT OF THAT, HAVE YOU FUNDED ANY RESEARCH INTO THE ROLE OF AUTISTIC PEOPLE IN NATIVE SOCIETIES IN HISTORY? IT WOULD SEEM TO ME THAT YOUR FUNDING OR OTHER INDIAN AGENCIES ARE FUNDING STUDIES INTO INDIAN CULTURE IN GENERAL. HAVE YOU STUDIED AUTISTIC CULTURE WITH A VIEW TO BUILDING SELF-ESTEEM THROUGH UNDERSTANDING? >> THANK YOU FOR THAT QUESTION. ONE ISSUE, I GUESS I SHOULD HAVE SAID THIS, INDIAN HEALTH SERVICE DOESN'T NECESSARILY DO RESEARCH, SO PART OF WHAT OUR RESEARCH WOULD COME FROM WOULD BE THE EVALUATION OF ANY INITIATIVE WE ROLL OUT. YOU ARE ABSOLUTELY RIGHT, AUTISM IS AN AREA WITHIN IHS THAT WE DO NOT HAVE A LOT OF INFORMATION EVEN ON THE NUMBER OF THOSE WHO ARE DIAGNOSED. I CAN SPEAK FROM PERSONAL EXPERIENCE THAT INDIAN HEALTH SERVICE IS NOT EVEN AWARE OF MY SON, BECAUSE WE'RE URBAN, HE IS NOT IN THE INDIAN HEALTH SYSTEM ELECTRONIC HEALTH RECORDS RIGHT NOW, SO HE WOULDN'T EVEN BE COUNTED IN THE NUMBERS. SO THAT'S ONE OF THE PIECES THAT I HAVE TAKEN FROM THIS COMMITTEE BACK TO INDIAN HEALTH SERVICE SO WE CAN HAVE THOSE CONVERSATIONS INTERNALLY ABOUT HOW CAN WE, ONE, IDENTIFY OUR AUTISTIC POPULATION SO WE KNOW HOW MANY ARE OUT THERE. WE KNOW WHAT AGE GROUP THAT HAVE BEEN DIAGNOSED, ARE WE LOOKING AT YOUTH, ARE WE LOOKING AT ADULT POPULATIONS, ARE WE LOOK AT SOMEWHERE IN THE SPECTRUM, SO THAT WAY WE CAN ALSO IDENTIFY WHERE WE REALLY NEED TO WORK ON IDENTIFYING RESOURCES FOR THEM, FOR OTHER INITIATIVES IN THE FUTURE. SO YOU'RE ABSOLUTELY RIGHT, SO I APPRECIATE YOU BRINGING THAT UP. >> I HAVE ONE MORE QUESTION THAT I FORGOT TO ASK. I WAS INTERESTED IN THE BLOOD QUORUM THAT YOU MENTIONED. HOW IS THAT -- IS THAT DONE VIA COMMERCIAL DNA TESTING OR I ASSUME IT'S DNA TESTING? >> ACTUALLY NO, THE BLOOD QUANTUM PIECE IS A LITTLE BIT DIFFICULT. SO WHAT THEY DO, EACH TRIBE IS A LITTLE BIT DIFFERENT SO I CAN SPEAK TO WHAT MY TRIBE DOES. WHEN YOU HAVE A CHILD, CLEARLY THEY DO A BLOOD TEST WHETHER YOU'RE MARRIED OR YOU'RE NOT MARRIED TO EB SURE THAT THE BIOLOGICAL PARENTS ARE REALLY THE BIOLOGICAL PARENTS. BECAUSE OF THE WHOLE BLOOD QUANTUM PIECE AND THE 25% HAS BECOME VERY POLITICAL, BECAUSE YOU HAVE TO BE 25% OR MORE. WITH THAT, ONCE THAT PIECE IS DONE, THEN EACH TRIBE HAS HISTORICAL RECORDS AS TO WHAT THE BLOOD QUANTUM IS OF MIGRATE GRANDPARENTS, ET CETERA, SO THEY MATHEMATICALLY EXEU TATE HOW WE ARE IN OUR FAMILY TREE. ONE OF THE ISSUES THAT HAS HAPPENED, I WANT TO SAY IT WAS 19 MAYBE 67, AND I COULD BE MISQUOTING HERE, THERE WAS A LARGE FIRE AND WHEN THAT FIRE HAPPENED, A LOT OF THE -- WHAT WE CALL TRIBAL ROLLS, OUR FAMILY TREES, THAT INFORMATION WAS LOST, SO THERE WAS SOME LEGISLATION THAT WAS PUT FORTH THAT IF FOLKS KNEW WHAT THEIR BLOOD QUANTUM WAS OR HAD RECORD, BECAUSE WE EACH HAVE -- WE CALL IT A BLUE CARD, AND IT HAS MY BLOOD QUANTUM ON THERE, IT HAS MY FAMILY TREE LINEAGE ON THERE, WE'RE TO BRING IT FORTH AND THEY COULD RE-CREATE THE RECORDS. FOR THOSE THAT DID NOT, THEY WERE ABLE TO MAKE AN ASSUMPTION OF WHAT BLOOD QUANTUM WAS FROM OTHER RECORDS WHICH WOULD BE ORAL CONVERSATIONS FROM OUR ELDERS IN THE COMMUNITY. AND AFTER THAT, THEN THEY HAD TO RE-CREATE ALL THE RECORDS FOR THE TRIBE OF WHERE OUR FAMILY LINEAGES START, SO THEN WE CONTINUED FROM THERE. SO THERE CAN BE SOME PROBLEMS WITH THAT CLEARLY, BUT THE BLOOD QUANTUM IS HELD BY THE TRIBE, AND EACH TRIBE HAS AN ENROLLMENT DEPARTMENT THAT MATHEMATICALLY FIGURES THAT OUT FOR YOU AND LETS YOU KNOW AND THEN THAT IS PUT ON YOUR IDENTIFICATION CARD. >> SO THAT'S VERY INTERESTING AND THANK YOU, BUT I'M WONDERING ABOUT PEOPLE WHO ARE HAVING THEIR DNA TESTED WHO NOW FIND OUT THEY'RE NATIVE AMERICAN, SO WHAT HAPPENS TO THEM? >> YES, SORRY, FORGOT ABOUT THAT WHOLE ANCESTRY.COM. YES, THOSE WHO ARE DOING DNA TESTING, THEY MAY FIND THAT THEY'RE NATIVE AMERICAN AND THEY MAY BE ABLE TO FIND WHAT PART OF THE COUNTRY THEY WOULD COME FROM. THEN IT WOULD BE UP TO THEM TO TRY TO GO BACK AND FIGURE OUT WITH THE ENROLLMENT DEPARTMENT OF THAT TRIBE OR TRIBES, BECAUSE THEY MAY NOT HAVE SPECIFIC TRIBES, TO FIGURE THAT OUT, IF THEY CAN FIND THAT PIECE USING -- AND THEY COULD USE ANCESTRY.COM, THE FAMILY TREE PIECE AND COME BACK TO FIND OUT IF ONE OF THOSE NAMES MATCH UP, BUT THERE WOULD BE A LOT OF HISTORICAL PIECES BUT THEY WOULD WORK WITH THE ENROLLMENT DEPARTMENT AT EACH OF THE TRIBES. ANY OTHER QUESTIONS? YES, SIR. >> SO YOU SAID THAT THE INDIAN HEALTH SERVICE ESSENTIALLY DEVOTES ALL OF ITS BUDGET TO DELIVERY OF SERVICES AS OPPOSED TO RESEARCH. ARE YOU SAYING THAT YOU DON'T FUND RESEARCH INTO SPECIFIC ISSUES THAT THE INDIAN HEALTH SERVICE WOULD ADDRESS? IF YOU DON'T, DOES SOME OTHER GOVERNMENT AGENCY DO THAT OR DO YOU ACTUALLY DO THAT BUT IT'S JUST A SMALL PART OF YOUR BUDGET? >> THANK YOU FOR THE QUESTION. WE DO HAVE A RESEARCH DEPARTMENT, BUT IT'S MORE FOR OUR FOLKS OF MINING OUR DATA THAT'S COMING IF IN FROM OUR ELECTRONIC HEALTH RECORDS. IT IS NOT NECESSARILY RESEARCH AS WE WOULD THINK LIKE FROM NIH OR CDC. SO IHS IS A DIRECT SERVICE ORGANIZATION. WE ARE NOT A RESEARCH ORGANIZATION. SO TO ANSWER YOUR QUESTION, NO, WE DO NOT HAVE FUNDS SET ASIDE TO DO SPECIFIC RESEARCH ACTIVITIES, BUT WE HAVE FUNDS SET ASIDE FOR OUR RESEARCH DEPARTMENT THAT IS MINING DATA FROM ELECTRONIC HEALTH RECORDS WHICH WOULD ALL BE CODABLE, LIKE DIAGNOSIS OR IDC-9 AND IDC-10 CODES, THINGS OF THAT NATURE. SO IT'S A LITTLE COMPLICATED. THAT'S PART OF WHY INDIAN HEALTH SERVICE, WE REALLY PARTNER WITH CDC AND NIH AND MANY OF THOSE AGENCIES HAVE TRIBAL OFFICES WITHIN THERE, AND WE TALK ABOUT WHAT RESEARCH NEEDS TO BE DONE, WE SHARE RESEARCH WITH EACH OTHER, WE TALK ABOUT WHAT WE'VE LEARNED FROM OUR INITIATIVES TO HELP THEM MOVE FORWARD WITH WHATEVER RESEARCH THEY'RE WORKING ON. >> JOHN, JUST SO YOU KNOW, THE NIMH AND I THINK ALL THE OTHER INSTITUTES DO HAVE -- CONDUCT RESEARCH SPECIFICALLY AIMED AT NATIVE AMERICAN POPULATIONS, AND MOST IF NOT ALL HAVE A NATIVE AMERICAN OFFICE WITHIN THE INSTITUTE, SO IT IS PART OF THE PURVIEW OF THE NIH TO CONDUCT BIOMEDICAL RESEARCH IN INDIAN COMMUNITIES THROUGHOUT THE UNITED STATES. >> YES, MA'AM. >> I WAS CURIOUS ABOUT THE WAY THAT THE TRIBES WORK TOGETHER TO DELIVER SERVICES. YOU'RE DESCRIBING SITUATIONS WHERE, FOR EXAMPLE, A MOTHER COULD BE ENROLLED IN ONE TRIBE AND THE DAUGHTER COULD BE ENROLLED IN ANOTHER TRIBE OR A SON COULD BE ENROLLED IN ANOTHER TRIBE. SINCE THE TRIBES ARE ADMINISTERING SERVICES DIRECTLY, DO THEY COORDINATE IN ORDER, YOU KNOW, TO SERVE FAMILIES THAT MIGHT HAVE MULTIPLE DIFFERENT REGISTRATIONS OR CAN THIS CAUSE ISSUES? >> IT ALWAYS CAN CAUSE ISSUE, BUT YES, THEY DO WORK TOGETHER. FOR EXAMPLE, THE MOM -- YOU BROUGHT UP A GREAT EXAMPLE, THE MOM COULD BE FROM THE COEUR D'ALENE TRIBE AND THE CHILD FROM THE CALL VILLE TRIBE -- BLOOD QUANTUM, THEY DECIDED WHERE THEY WANTED TO BE ENROLLED. IF THEY WERE RESIDING ON ONE TRIBE, WHAT THEY WOULD DO IS HAVE THAT SERVICE UNIT TALK TO THE TRIBE F THE ENROLLED TRIELD CHILD WITH THAT SERVICE UNIT AND THEY COULD EITHER TRANSFER THE RECORDS OVER AND PROVIDE SERVICES OR THEY WOULD WORK TOGETHER AND PROVIDE SERVICES. THAT GOES EVEN WITHIN THE TRIBAL COURT SYSTEMS BECAUSE IT GETS A LITTLE COMPLICATED WHEN THEY'RE TALKING ABOUT CUSTODY, DIVORCES, THINGS OF THAT NATURE, SO THE TRIBES DO WORK TOGETHER. THEIR GOAL HAS ALWAYS BEEN ABOUT PROVIDING SERVICES FOR THE TRIBES. WHEN IT IS SOMEONE WHO IS WITHIN IHS AND IHS FACILITY, WE WORK WITH TRIBES TO MAKE SURE THERE'S CONTINUITY OF CARE IF THEY'RE MOVING BACK AND FORTH BETWEEN MOM AND DAD AS WELL. GOOD QUESTION. THANK YOU. YES? >> I WONDER IF YOU COULD COMMENT ON WHETHER THERE ARE CULTURAL OR STIGMA-RELATED BARRIERS TO INDIVIDUALS SEEKING THE SERVICES THAT THE INDIAN HEALTH SERVICE PROVIDES. >> ABSOLUTELY. THANK YOU. EXCELLENT QUESTION. THERE IS ALWAYS BARRIERS. SOME BARRIERS CAN BE FINANCIAL BARRIERS, SOME CAN BE DISTANCE BARRIERS. SOME CAN BE LACK OF PROVIDER BARRIERS. MEANING THAT THEY DO HAVE ACCESS. THERE'S A BUILDING BUT THEY JUST DON'T HAVE A CONTRACTUAL PROVIDER OR A FULL TIME PROVIDER ON STAFF. WHEN IT COMES TO THE STIGMA, THERE IS A LOT OF STIGMA OUT IN INDIAN COMMUNITIES. PART OF IT IS THE LACK OF MISTRUST IN GENERAL. THAT WOULD BE THE VERY TOP LAYER. THEN IT WOULD BE -- I'M NOT SURE I WANT TO KNOW WHAT'S REALLY GOING ON WITH ME, SO I'M NOT REALLY SURE I WANT TO GO IN TO FIND OUT. THEN IT'S, I DON'T WANT OTHER PEOPLE TO KNOW. SO ONE OF THE THINGS THAT HAPPENS IN TRIBAL COMMUNITIES IS YOU KNOW EVERYONE'S BUSINESS. SO THE PROBLEM WE HAVE IS SOME FOLKS SAY, HEY, INTEGRATED CARE, LET'S PUT EVERYONE AND THE SAME BUILDING. WELL, LET'S SAY YOU COME IN ON THE NORTH END OF THE BUILDING AND YOU WALK BY MY COUSIN WHO'S SITTING AT THE REGISTRATION AND YOU'RE COMING IN, I'M ALREADY CALLED ON THE SOUTH END OF THE BUILDING SAYING, HEY, SHE JUST WALKED BY, I WONDER WHAT SHE'S DOING HERE. SO UNFORTUNATELY, THAT'S PART OF THE PROBLEM IN SMALL TRIBAL COMMUNITIES IS, BEING A PROVIDER. WHEN I WAS THE TRIBAL PSYCHOLOGIST, EVERYONE KNEW WHERE I LIVED. NOT THE SAFEST THING. EVERYONE KNEW WHERE I LIVED. THEY KNEW HOW TO FIND ME. THEY KNEW MY CARS, THEY KNEW MY HUSBAND'S CARS, THEY KNEW MY CHILDREN. YOU KNOW, SO IT'S COMPLICATED AND SO IT'S REALLY IMPORTANT FOR THE PROVIDERS TO BUILD THAT TRUST TO SET THOSE BOUNDARIES, AND I THINK AS WE SET THOSE BOUNDARIES WITH OUR PATIENTS, THEY CLEARLY WILL RESPOND AND THEY RESPECT THAT AND OFTENTIMES THAT HELPS THEM GET OVER THAT STIGMA BECAUSE THEY REALIZE WE'RE THERE TO HELP THEM. THANK YOU FOR THAT QUESTION. >> THANK YOU VERY MUCH, MARCY, FOR A FANTASTIC PRESENTATION. >> THANK YOU. [APPLAUSE] >> AND THANK YOU TO THE COMMITTEE FOR AN ACTIVE DISCUSSION. HOPEFULLY THAT WILL CONTINUE AS WE MOVE INTO THE COMMITTEE BUSINESS PORTION OF THE MORNING. THE FIRST COMPONENT OF WHICH IS THE SUMMARY OF ADVANCES. YOU'LL NOTICE IN YOUR FOLDERS, YOU HAVE THREE DIFFERENT PACKETS WITH THE SUMMARY OF ADVANCES. EUM GOINGI'M GOING TO LET SUSAN DESCRIBE THOSE TO YOU, THEN WE'LL GO INTO THE DISCUSSION. >> SURE. THANK YOU, MARCY, FOR YOUR INFORMATIVE PRESENTATION. WE APPRECIATE IT. IN THE PACKETS, YOU HAVE THREE DIFFERENT PACKETS IN YOUR FOLDER, SO ONE IS THE COMBINED SUMMARY OF ADVANCES NOMINATIONS FOR THE ENTIRE YEAR OF 2017. WHICH WE PROVIDED JUST IN CASE SOMEONE WANTS TO SEE EVERYTHING UNDER A PARTICULAR CATEGORY. WE HAVE A PACKET THAT SAYS SUMMARY OF ADVANCES THROUGH OCTOBER, SO THESE ARE ONES WE WENT OVER IN PREVIOUS MEETINGS AND THEY WERE BASICALLY ACCEPTED BY THE COMMITTEE AS NOMINATIONS. AND THEN THE ONE THAT WE WILL BE DISCUSSING TODAY IS THE ONE LABELED OCTOBER THROUGH DECEMBER 2017. THESE ARE THE NEWEST NOMINATIONS THAT WE HAVE NOT YET DISCUSSED BUT WE'RE ABOUT TO DISCUSS. >> AND WOULD YOU -- ARE YOU GOING TO GO OVER THE PROCESS? >> YES. ALL RIGHT. SO TO GET STARTED, JUST WANT TO BRIEFLY GO BACK THROUGH WHAT THE PROCESS IS FOR THE SUMMARY OF ADVANCES, ESPECIALLY SINCE WE DO HAVE SOME NEW COMMITTEE MEMBERS WHO HAVE JOINED SINCE WE LAST DID THIS. SO THE SUMMARY OF ADVANCES IS A STATUTORY REQUIREMENT UNDER THE AUTISM CARES ACT AND IT PROVIDES A SUMMARY OF RESEARCH ADVANCES INFORMING CONGRESS AND THE COMMUNITY OF WHAT HAS BEEN HAPPENING IN TERMS OF ADVANCES MADE IN SCIENTIFIC AND SERVICES RESEARCH. SO THE FORMAT FOR THE SUMMARY OF ADVANCES THAT WE PREPARE IN A BOOKLET WITH LAY FRIENDLY SUMMARIES OF THE TOP 20 MOST SIGNIFICANT ADVANCES IN ASD BIOMEDICAL AND SERVICES RESEARCH THAT WERE SELECTED BY THE IACC. THIS TYPICALLY INCLUDES ARTICLES ADDRESSING ALL SEVEN TOPIC AREAS OF THE IACC'S STRATEGIC PLAN. SO THE PROCESS WE'VE BEEN GOING THROUGH OVER THE LAST YEAR IS THAT WE'VE BEEN SENDING OUT MONTHLY EMAILS TO COMMITTEE MEMBERS TO SOLICIT ARTICLE NOMINATIONS FROM ALL OF YOU, AND YOU'VE BEEN SENDING THOSE IN ALONG WITH JUSTIFICATIONS. WE'VE COMPILED QUARTERLY THESE DIFFERENT ADVANCE NOMINATIONS AND WE'VE DISCUSSED THEM AT IACC MEETINGS SO YOU HAVE THEM HERE IN YOUR PACKET. TODAY AT OUR MEETING, WE'RE GOING TO BE DISCUSSING THE TOP ARTICLE -- AT THE JANUARY MEETING, WE'RE GOING TO BE DISCUSSING THE TOP ARTICLES AMONG THOSE NOMINATED BUT ACTUALLY WE'RE GOING TO BE TALKING THROUGH THE ONES THAT WERE NOMINATED THIS TIME AND VETTING THOSE. AFTER THE MEETING IS OVER, WE'RE GOING TO BE VOTING ON THE TOP 20 ARTICLES TO BE INCLUDED IN THE 2017 IACC SUMMARY OF ADVANCES, THE ONES THAT WILL BE HIGHLIGHTED AND WRITTEN UP, SO WE WILL BE SENDING OUT WRITTEN BALLOTS TO ALL AND YOU'LL HAVE A CHANCE TO VOTE ON WHAT YOUR TOP 20 ARE. AND WE'LL TAKE A TIE BREAKER VOTE IFNESS SAIR NECESSARY. WE WILL SELECT -- ONCE YOU'VE SELECTED THE ARTICLES, WE'LL PROVIDE SUMMARIES OF EACH OF THOSE ARTICLES, SHORT SUMMARIES THAT ARE IN LAY LANGUAGE THAT ANYONE CAN UNDERSTAND. THE NOMINATED ARTICLES THAT WERE NOT SELECTED WILL BE LISTED IN THE APPENDIX OF THE DOCUMENT SO THAT ALL OF THE NOMINATIONS WILL HAVE SOME RECOGNITION. IN ABOUT MARCH, WE WILL BE SENDING OUT A DRAFT OF THE PUBLICATION FOR THE COMMITTEE TO BRIEFLY REVIEW, THEN THE FINAL PUBLICATION WILL BE PRESENTED AT THE APRIL 2018 IACC MEETING, WHICH WILL HAPPEN DURING AUTISM AWARENESS MONTH. SO THAT'S OUR PROCESS. ANY QUESTIONS ABOUT THAT? SO TO GO OVER WHAT HAS HAPPENED IN THE LAST YEAR, WE'VE HAD 11 DIFFERENT IACC MEMBERS SUBMIT A TOTAL OF 81 NOMINATIONS, AND ACROSS THE QUESTIONS OF THE STRATEGIC PLAN, WE HAVE SOME STATISTICS HERE OF HOW MANY DIFFERENT ARTICLES WERE NOMINATED IN EACH OF THOSE CATEGORIES. SO NOW WE CAN MOVE TO THE SET OF NOMINATIONS THAT CAME IN THIS LAST QUARTER. >> SO WE ARE GOING TO GO AHEAD AND PROCEED WITH THE DISCUSSION. TYPICALLY WHAT WE'VE DONE HERE IS ALLOWED THOSE WHO HAVE NOMINATED ARTICLES TO SPEAK UP ABOUT ONES THEY WOULD PARTICULARLY LIKE TO BRING UP TO THE GROUP, TO HIGHLIGHT THEM FOR THE EVENTUAL VOTING, AS WELL AS ANY COMMENTS FROM ANY MEMBERS WHO FEEL THAT THERE ARE -- ARTICLES THAT ARE NOMINATED THAT PERHAPS SHOULD BE LEFT OFF THE LIST OR ARGUE AGAINST CONSIDERATION IN THE FINALIST. AND WE USUALLY GO THROUGH IT QUESTION BY QUESTION. SO WE'LL GO AHEAD AND START WITH QUESTION ONE AND ASK IF THERE ARE ANY COMMITTEE MEMBERS WHO WANT TO SPEAK UP ABOUT PARTICULAR ARTICLES THAT ARE INCLUDED HERE. >> FOR THOSE FOLLOWING ALONG ON THE PHONE, THESE DOCUMENTS ARE AVAILABLE ON THE WEB. >> PLEASE, GO AHEAD, JOHN. >> SO ACTUALLY, JOSH, I WANT TO RAISE A CONCERN ABOUT YOUR NOMINATION, RACE INFLUENCE -- REPORT OF CONCERNS ABOUT SYMPTOMS OF AUTISM. >> PLEASE GO AHEAD. >> IT'S ON PAGE 2. NOW, I AGREE WITH YOU THAT THIS IS AN IMPORTANT PAPER. AND YOU SAY THAT DISPARITIES IN SERVICES BETWEEN BLACK AND WHITE COMMUNITIES IS A SIGNIFICANT ISSUE, WHICH I THINK WE'RE ALL AWARE OF, AND THEN YOU POINT OUT THAT THIS REPORT SHOWS THAT BLACK PARENTS HAD SIGNIFICANTLY FEWER CONCERNS ABOUT AUTISM IN THEIR CHILDREN IN GENERAL THAN WHITE PARENTS, AND THE OBVIOUS IMPLICATION IS THAT THAT LEADS TO FEWER SERVICES BEING RENDERED IN THE FUTURE. AND I GUESS THAT'S A REASONABLE HYPOTHESIS. BUT WHAT WORRIES ME IS THAT WE DO NOT HAVE A COMPANION STUDY TO THIS LOOKING AT DIFFERENCES IN CONCERN BETWEEN AUTISTIC AND NON-AUTISTIC PARENTS AND THEIR CHILDREN. AND WHEN I THINK OF MY OWN PARENTING EXPERIENCE AS AN AUTISTIC DAD, PEOPLE TOLD ME THAT I WAS UNCONCERNED ABOUT THINGS THAT I SHOULD BE CONCERNED ABOUT AND MY KID DIDN'T GET SERVICES AND OF COURSE I DIDN'T GET SERVICE, SO I'M NOT SURE IT'S AS SIMPLE AS A BLACK AND WHITE THING. AND I THINK THIS IS A SIGNIFICANT PAPER BUT TO ME, THIS IS A PAPER THAT STRONGLY SUGGESTS THAT WE NEED TO BREAK THESE COMMUNITIES DOWN FURTHER AND UNDERSTAND WHAT IT MEANS. I DON'T THINK, FOR EXAMPLE, THAT MY FEELING THAT AUTISM IS NOT SO TERRIBLE A THING WHEN IT'S DIAGNOSED IN MY SON SHOULD LEAD TO MY SON GETTING FEWER SERVICES OR ME GETTING FEWER SERVICES, BUT I RECOGNIZE THAT'S THE TRUTH OF IT. AND WHAT ARE WE GOING TO DO ABOUT THAT? SO I THINK THIS IS AN IMPORTANT PAPER BUT IT'S IMPORTANT BECAUSE IT POINTS TO WHAT WE NEED TO DO NEXT, AND I I'D LIKE TO SUGGEST THAT WE MAKE THAT CLEAR IN OUR SUMMARY. >> THANK YOU. THAT'S A HELPFUL COMMENT. I HAVE ONE POINT TO MAKE WITH REGARD TO THE ISSUE OF AWARENESS OF ALL HEALTH ISSUES, WHICH I'M NOT SURE IS EXACTLY CENTRAL TO THE POINT YOU WERE MAKING, BUT THERE IS A CONTROL BUILT INTO THE STUDY WHICH IS THAT BLACK PARENTS WERE AS LIKELY TO NOTE CONCERNS ABOUT NON-MENTAL HEALTH ISSUES IN THESE SAME CHILDREN. SO IT SEEMED TO BE AT LEAST SPECIFIC TO THEIR UNDERREPORTING OF CONCERN SEEMED TO BE RELATIVELY SPECIFIC TO THE AUTISM FOCUSED SYMPTOMS, BUT I AGREE MUCH MORE WORK IS NEEDED AND I THINK IN GENERAL, WE FIND IN OUR MENTAL HEALTH DISPARITIES RESEARCH PORTFOLIO THAT WE HAVE A LOT OF EVIDENCE FOR DISPARITIES AND NOT YET A LOT OF EVIDENCE ABOUT EXACTLY WHY OR EXACTLY WHAT TO DO ABOUT IT. AND I WOULD SAY THAT IT'S GOOD THAT YOU POINT THAT OUT BECAUSE THESE ARE THE REALLY IMPORTANT NEXT STEPS THAT THE RESEARCH DISPARITIES COMMUNITY AND THAT NIMH REALLY NEEDS TO BE ABLE TO ADDRESS. >> I THINK THAT IT REALLY IS SOMETHING THAT THE COMMUNITY DOESN'T RECOGNIZE. IN MY TIME SERVING ON THESE GOVERNMENT COMMITTEES, I HAVE COME TO RECOGNIZE THAT I SUFFER AND SUFFER IS THE CORRECT WORD, FROM A NUMBER OF CO-OCCURRING CONDITIONS THAT ACCOMPANY AUTISM, AND YOU KNOW I LIVED MY WHOLE LIFE IN IGNORANCE OF THAT BECAUSE IT'S THE WAY I WAS FROM BIRTH. SO WHEN I SEE A PAPER LIKE THIS, I THINK WHAT YOU SAID, YES, THAT'S AN IMPORTANT POINT, THAT THE BLACK AND WHITE DISPARITY DIDN'T EXIST WITH RESPECT TO OTHER DIFFERENCES, ONLY AUTISM, BUT I THINK IT CAN AFFECT US VERY MUCH AND IN WAYS THAT WE CAN'T RECOGNIZE AND WE NEED OUTSIDE HELP TO UNDERSTAND IF WE'RE GOING TO GET HELP, GET BENEFIT LATER. >> APPRECIATE THAT, JOHN. ARE THERE OTHER COMMENTS ABOUT THIS PARTICULAR PAPER? >> I'D LIKE TO ADD, I CERTAINLY AGREE THIS STUDY SHOULD BE IN THE SUMMARY OF ADVANCES BUT SINCE WE'RE TALKING ABOUT RACIAL DISPARITIES IN AUTISM, I THINK ANOTHER THING WE HAVE TO CONSIDER IS THAT SOMETIMES IF A CULTURE IS NOT VERY CONCERNED ABOUT A PARTICULAR MANIFESTATION OF AUTISM, IT SAYS REPETITIVE BEHAVIORS, FOR EXAMPLE, THAT MIGHT NOT MEAN THAT THEY'RE WRONG, THAT SHE SHOULD BE REALLY UPSET ABOUT REPETITIVE BEHAVIORS, THEY SHOULD BE REALLY CONCERNED ABOUT THAT AND WE NEED TO EDUCATE THEM THAT THEY SHOULD BE CONCERNED, MAYBE INSTEAD WE NEED TO TAILOR SERVICES SO THAT THEY ACTUALLY EMPHASIZE AND RESPOND TO THE THINGS THAT PARENTS ACTUALLY ARE CONCERNED ABOUT, LIKE ACADEMICS, EMOTIONAL DEVELOPMENT, DISRUPTIVE BEHAVIORS, AND OTHER THINGS THAT ARE ALSO POTENTIALLY SIGNS OF AUTISM, BUT AREN'T WHAT ARE GETTING TALKED ABOUT AS MUCH IN OUTREACH TO PARENTS. >> THANK YOU, SAMANTHA. OKAY. OTHER POINTS ABOUT EITHER THIS PAPER OR ANY OF THE OTHER PAPERS LISTED IN RESPONSE TO QUESTION ONE? >> HI, THIS IS GERI. I'D LIKE TO MAKE A COMMENT ON THE SECOND PAPER. >> GO AHEAD, GERI. >> HI. THIS IS THE PAPER ON LOOKING AT THE VIOLENT ADAPTIVE BEHAVIOR SCALE, AND I HAVE BEEN A LITTLE DISADVANTAGED -- >> CAN YOU SAY WHICH PAGE THAT'S ON? >> THE FIRST PAPER. ADAPTIVE SKILLS. >> SO WHAT I HEAR AND WHAT I SEE IS OUT OF SYNC SO I'M A LITTLE AT A DISADVANTAGE BUT I'M PRETTY SURE I SAW A SLIDE THAT HAD THAT LARGE ANALYSIS OF THE VIOLENT ADAPTIVE BEHAVIOR SCALES, THE MINIMALLY CLINICALLY SIGNIFICANT DIFFERENCE PAPER? >> YEP. WE'VE GOT IT. IT'S ON THE FIRST PAWJ. THANK YOU. >> RIGHT. I JUST WANTED TO MAKE A COMMENT ON THAT. FIRST I'M NOT SURE THIS IS THE CATEGORY IT SHOULD BE IN. SO WHAT THIS WAS IS THAT AS YOU KNOW, ONE OF THE BIGGEST CHALLENGES IN EVALUATING THE EFFICACY OF NOVEL NEW TREATMENTS IS THE ABILITY TO MEASURE WHETHER THE TREATMENT HAD AN EFFECT, SO MANY PEOPLE HAVE BEEN WORKING ON NOVEL WAYS OF ASSESSING OUTCOMES AND ONE OF THE MEASURES THAT HAS PROMISE SL THE VIOLENT ADAPTIVE BEHAVIOR SCALES, PARTICULARLY THE SOCIALIZATION SUBSCALE. BUT THE CHALLENGE IS THAT THERE'S DEVELOPMENT THAT GOES ON IN A TRIAL, SO FOR EXAMPLE, IF YOU'RE WITH A 5-YEAR-OLD, OVER 6 MONTHS YOU'RE GOING TO SEE CHANGES JUST DUE TO DEVELOPMENT AND YOU HAVE TO DISENTANGLE THAT FROM THE TREATMENT EFFECT. AND SO WHAT WAS DONE HERE IS THEY GATHERED ALL OF THE VIOLENT DATA AVAILABLE IN THE LITERATURE, AND THIS IS THOUSANDS OF CHILDREN AND ADULTS, AND THEN LOOKED AT WHAT'S THE NATURAL COURSE, AND THEN MADE A DECISION ON HOW WOULD YOU DETERMINE WHAT WOULD BE THE MINIMAL CHAIK CHANGE THAT YOU'D HAVE TO SEE IN ORDER TO SAY THAT THIS TREATMENT WAS EFFECTIVE. THAT WAS A HUGE AMOUNT OF WORK AND IT'S ACTUALLY PIVOTAL FOR THE FIELD, AND MANY OF US ARE USING IT AS A PRIMARY END POINT IN CLUN CAL CLINICAL TRIALS, AND THIS STUDY IS JUST HUGELY HELPFUL IN BEING ABLE TO CONDUCT TRIALS. SO I JUST WANTED TO KIND OF GIVE A CONTEXT FOR THAT AND ALSO SUGGEST THAT PERHAPS IT SHOULD GO IN THE TREATMENT CATEGORY. >> OKAY. ANY DISSENT INTO MOVING INTO THE TREATMENT CATEGORY? THANK YOU, LAURA. DID YOU WANT TO SAY ANYTHING ELSE ABOUT IT? >> NO, THANK YOU, GERI, FOR THAT OVERVIEW AS WELL AND I WOULD SUPPORT THE MOVEMENT TO TREATMENT AS WELL. I FEEL LIKE IT COULD BE EITHER BUT THE IMPLICATIONS FOR TREATMENT ARE QUITE REMARKABLE. >> OTHER COMMENTS ABOUT ANYTHING IN CATEGORY ONE, WHICH IS THE FIRST FOUR PAGES? >> HOW MANY STUDIES ARE WE GOING TO PUBLISH IN OUR SUMMARY? JUST ONE STUDY FOR EACH QUESTION OR MORE THAN ONE? >> IT'S A TOTAL OF 20, AND IT CAN BE DIVIDED AMONG THE SEVEN, BUT THERE HAVE BEEN SOME YEARS WHEN ONE OF THE SEVEN QUESTIONS HAD NO FINAL SELECTED ARTICLES. >> DAVID, I HAD A QUESTION ABOUT ONE THAT YOU PUT FORTH AND IT'S NOT A QUESTION TO RAISE DOUBT ABOUT WHETHER IT BELONGS HERE BUT JUST A FOLLOW-UP QUESTION TO IT AS I'M LOOKING AT IT, WHICH IS, SO THE STUDY AS YOU SUMMARIZE IT DEMONSTRATES DIFFERENCES IN CHILDREN AT RISK VERSUS CHILDREN AT LOWER RISK FOR AUTISM, AND IMAGING FINDINGS PARTICULARLY IN CEREBRAL SPINAL FLUID AMOUNTS. HAVE THESE AUTHORS LOOKED AT WHETHER THAT PREDICTS RISK FOR DIAGNOSIS LATER IN LIFE? >> SO THAT WAS THE FINDING. SO INCREASED -- FLUID AT SIX MONTHS WAS ASSOCIATED WITH DIAGNOSIS AT 24 MONTHS ACTUALLY. >> AND HOW MANY INDIVIDUALS WERE IN THE STUDY? >> SO THIS IS THE IBIS NETWORK SO IT'S A BIG STUDY, THERE WERE 55 CHILDREN THAT ULTIMATELY HAD A DIAGNOSIS OF AUTISM OUT OF, I THINK, 347 THAT WERE STUDIED. >> SO THIS IS THEN ANOTHER ASPECT FOR EARLY SCREENING AKIN TO THE -- WAS THE -- KIND OF THE STUDY THAT WE HIGHLIGHTED I BELIEVE LAST YEAR, RIGHT, OF BRAIN GROWTH PATTERNS OF 6 TO 12 MONTH. IS THIS THE SAME GROUP OR A DURCH GROUP? >> SAME GROUP. I THINK THE IMPORTANCE OF SIGNIFICANCE IN MY MIND IS THAT IT AGAIN SHOWS THAT BRAIN CHANGES AT 6 MONTHS ARE PREDICTIVE OF LATER DIAGNOSIS OF AUTISM. AND THAT'S NUMBER ONE. NUMBER TWO IS IT HIGHLIGHTS THE FACT THAT DISEQUILIBRIUM OF THE CEREBRAL SPINAL FLUID SYSTEM MIGHT ACTUALLY BE ASSOCIATED WITH -- SO IT TURNS OUT THAT IN THIS PAPER AND THE PREVIOUS PAPER, CHILDREN THAT HAD MORE SEVERE AUTISM WHEN DIAGNOSED HAD INCREASED LEVELS OF EXTRA AXIAL FLUID OVER THOSE THAT HAD LESS SEVERE, SO THE CORRELATION BETWEEN THE AMOUNT AND THE SEVERITY OF AUTISM SUGGESTING THAT HAVING THIS PROBLEM WITH CEREBRAL SPINAL FLUID MIGHT ACTUALLY HAVE SOME CAUSAL RELATIONSHIP. ALTHOUGH THAT HAS TO BE DEMONSTRATED. >> JOHN, GO AHEAD. >> I'VE GOT ANOTHER STUDY THAT I THINK ASKS A SIMILAR QUESTION THAT'S WORTH REPORTING. JENNIFER JOHNSON NOMINATED PARENT REPORTED STRENGTHS IN CHILDREN WITH AUTISM, AND IN THAT STUDY, PARENTS REPORTED MORE STRENGTHS IN COGNITIVE FUNCTIONING AND PERSONALITY CHARACTERISTICS. I THINK WHAT THAT STUDY POINTS TO IS THAT PARENTS ARE RECOGNIZING AUTISM AS EXCLUSIVELY A BEHAVIORAL OR COGNITIVE DIFFERENCE IN THEIR CHILDREN, AND SO THEY RECOGNIZE CERTAIN COGNITIVE STRENGTHS IN CHILDREN. WE HAVE SEEN WHAT I WOULD REGARD AS VERY POWERFUL EVIDENCE OF SUBSTANTIAL GENERAL HEALTH PROBLEMS AMONG AUTISTIC PEOPLE LATER IN LIFE, AND I THINK IT'S VERY REASONABLE TO ASK IF EARLY RECOGNITION AND INTERVENTION FOR THOSE VULNERABILITIES COULD BE VERY, VERY HELPFUL FOR US AUTISTIC PEOPLE. AND I THINK IN PARTICULAR, THIS STUDY SUGGESTS TO ME BROAD PARENTAL IGNORANCE OF THE LIKELY MEDICAL PROBLEMS THAT AUTISTIC PEOPLE ARE WRESTLING WITH. WE TALK HERE ABOUT HOW PAIN MIGHT CAUSE US TO ACT OUT, AND BE MISINTERPRETED AS A PSYCHIATRIC PROBLEM WHEN, IN FACT, IT'S A RESPONSE TO PAIN, THIS STUDY TO ME SUGGESTS THAT WE NEED TO ADDRESS THAT IN A MORE FOCUSED WAY IN OUR RESEARCH RESEARCH. >> I MUST CONFESS, I'M MISSING THE COULD NECK. ARE YOU THE CONNECTION. ARE YOU SUGGESTING THAT PARENTS FOCUS ON THE COGNITIVE SYMPTOMS AND STRENGTHS OF THEIR CHILDREN AND, THEREFORE, ARE MISSING THE PHYSICAL HEALTH MANIFESTATIONS EARLY IN LIFE? >> YES, EXACTLY. I'M SUGGESTING THAT THE FACT THAT THE OVERWHELMING THING PARENTS REPORT HERE IS COGNITIVE STRENGTH AND COGNITIVE ISSUES SUGGESTS TO ME THAT PARENTS ARE TOTALLY IGNORANT OF WHAT MEDICAL THINGS MAY BE LURKING IN THE BACKGROUND IN YOU A TITION TICK CHILDREN. >> US A TIS TICK CHILDREN. >> THAT'S SOMETHING WE'D NEED TO LOOK AT. >> I GUESS IT'S A CON TRAIRIAN INTERPRETATION OF WHAT THE SCIENTISTS HAVE REPORTED BUT I BELIEVE IT TO BE LIKELY. >> OKAY. LAURA HAD A NUMBER OF THEM THIS TIME. I WONDER IF THERE'S ANY ONES PARTICULARLY IN GROUP ONE THAT YOU WANTED TO HIGHLIGHT AS ONE OR MORE THAT YOU REALLY ARE -- >> I'M REALIZING THAT WE WERE QUITE -- >> I'M ALSO THINKING THAT GIVEN THAT YOU PROBABLY SUBMITTED ALMOST 20 THIS TIME ALONE, THAT YOU MIGHT WANT TO HIGHLIGHT A FEW THAT YOU REALLY ARE -- FEEL STRONGLY ABOUT. >> I THINK THE VINE LINDEN -- I THINK BOTH JENNIFER AND I RECOMMENDED ON PAGE 4 THE MOODY SCREENING FOR AUTISM WITH SRS AND SCQ, I THINK THAT'S SIGNIFICANT AS WELL. I THINK THE FINDINGS REGARDING THE DSM-IV AND 5 ARE INTERESTING AND IMPORTANT, BUT I WOULD HIGHLIGHT THE MOODY FROM THE SCREENING AND DIAGNOSIS SECTION. >> THANK YOU. MOVING RIGHT ALONG, WE'LL MOVE TO QUESTION 2, THE UNDERLYING BIOLOGY. THERE WERE A NUMBER OF SUBMISSIONS THERE. ANYONE WANT TO SPEAK UP ABOUT ANY PARTICULAR ARTICLES? WHAT PAGE ARE WE ON NOW, JOSH? >> THANK YOU FOR CLARIFYING. WE'RE ON PAGES 5 THROUGH 7. THERE ARE SEVEN SUBMISSIONS IN QUESTION 2. >> THANK YOU. >> I WANT TO TAKE A MOMENT TO HIGHLIGHT IN PARTICULAR ONE OF THE TWO SUBMISSIONS THAT WE PUT IN. JUST TO MENTION THAT THE WIRE STUDY, THE LAST ONE ON PAGE 7, IS ONE OF A RARE BUT GROWING NUMBER OF STUDIES LOOKING AT POSTMORTEM BRAINS OF INDIVIDUALS WITH AUTISM WHO DIED BUT DONATED THEIR BRAINS FOR RESEARCH, WHICH IS WONDERFUL AND HAS BEEN AN AREA WHERE IT'S BEEN CHALLENGING TO DEVELOP LARGE GROUPS OF BRAINS. THIS IS NOT THE LARGEST STUDY THAT'S BEEN PUBLISHED BUT 32, DAVID, YOU MIGHT COMMENT WHETHER THAT REPRESENTS A SIGNIFICANT CONTRIBUTION TO THE LITERATURE? IT IS THE LARGEST PUBLISHED TO DATE. SO AT 32 BRAINS, WE MIGHT THINK THIS IS PRELIMINARY, AND I THINK GIVEN WHAT WE KNOW ABOUT OTHER PSYCHIATRIC DISORDERS, IT'S PROBABLY A CHALLENGE TO THINK OF THIS AS DEFINITIVE, BUT IT REALLY REPRESENTS A STEP FORWARD FOR THE FIELD TO BE ABLE TO COLLECT THAT LARGE A STUDY AND TO CONDUCT IT THAT RIGOROUSLY. >> THIS IS JULIE TAYLOR ON THE PHONE. I WOULD, I THINK, LIKE TO HIGHLIGHT THE DUE VA CAT, IS THAT HOW YOU SAY IT, LOOKING AT BI-DIRECTIONAL EFFECTS BETWEEN CORE SYMPTOMS AND ANXIETY. WE'VE HAD A LOT OF CONVERSATIONS ABOUT HOW CO-OCCURRING MENTAL HEALTH PROBLEMS ARE SUCH A PRESSING CONCERN, AND WE JUST KNOW VERY, VERY LITTLE ABOUT HOW THOSE RELATE TO CORE SYMPTOMS AND PARTICULARLY DIRECTIONALITY, AND I THINK THIS IS A REALLY NICE STEP FORWARD IN TERMS OF MOVING OUR THINKING FORWARD ABOUT WHAT LEADS TO WHAT AND CHICKEN IN EGG AND IG EGG ISSUES. I THINK THI IS A NICE PAPER. >> I WONDER -- THE CONNECTION BETWEEN ANXIETY SYMPTOMS CONTRIBUTING TO SOCIAL COMMUNICATION IMPAIRMENTS BUT NOT VICE VERSA. THAT'S MY READ, ANYWAY, OF THE JUSTIFICATION. >> YOU KNOW, I DON'T REMEMBER THE DETAILS, MAYBE JULIE DOES. JULIE, DO YOU REMEMBER THE DETAILS? >> YEAH, SO CORRECT ME IF YOU REMEMBER THIS DIFFERENTLY, DAVID, BUT THEY USED CROSS LEG MODELS, SO THEY ARE ACCOUNTING FOR THE INITIAL LEVELS OF AUTISM SYMPTOMS, AND INTERNALIZING ISSUES, ANG ANXIETY, AND LOOKING TO SEE WHICH EARLIER VARIABLE -- CONTROLLING FOR BOTH DIRECTIONS OF EFFECT AT THE SAME TIME AS WELL AS STABILITY EFFECTS. >> GOTCHA. SO IT'S ESSENTIALLY A TEMPORAL ORDER AND THEN ALSO I WOULD IMAGINE SOME SORT OF PREDICTION METHOD. >> YES. >> OKAY. SO I THINK FOR MY OWN PERSPECTIVE, I'M GOING TO TRY TO TAKE A LOOK AT THIS PAPER FOR MYSELF JUST BEFORE I WOULD VOTE. BUT IN GENERAL, THE METHODS USED FOR THIS IS TO TRY TO LOOK AT NOT JUST WHICH OCCURS FIRST BUT WHETHER THE EARLIER SYMPTOMS IN ONE PREDICT THE LATER OCCURRING SYMPTOMS IN ANOTHER. >> RIGHT. >> THAT'S RIGHT. AND I SHOULD -- >> GO AHEAD, JULIE. SORRY. >> OH. I WAS JUST GOING TO AGREE, YES. >> I THINK IT'S -- SO I WISH I REMEMBER THE METHODOLOGY BETTER, BUT WHAT IMPRESSED ME WAS THAT THE ANXIETY SYMPTOMS CLEARLY EXACERBATED THE SOCIAL IMPAIRMENT, THE IMPLICATION WAS THAT IF YOU COULD TREAT THE ANXIETY COMPONENT, IT WOULD REDUCE THOSE SOCIAL IMPAIRMENT AND THEN ALLOW INDIVIDUALS TO TAKE ADVANTAGE OF OTHER BEHAVIORAL THERAPIES THAT MIGHT GO TO THE CORE SYMPTOMS OF AUTISM. I THINK THE OTHER THING THAT WAS SURPRISING IN THE PAPER WAS THAT THERE'S A COMMON ASSUMPTION THAT THE REPETITIVE BEHAVIORS OF AUTISM MAY BE ACTUALLY RELATED TO ANXIETY, AND AGAIN, NOT REMEMBERING EXACTLY THE DETAILS OF HOW THEY CONCLUDED THIS, THEY FOUND THAT THAT WASN'T THE CASE, THAT THEY COULD DISASSOCIATE THE REPETITIVE BEHAVIORS FROM THE LEVEL OF ANXIETY SYMPTOMS. BOTH ASPECTS, I THINK ARE INTERESTING. >> AND DO WE KNOW HOW BIG A STUDY IT WAS IN TERMS OF THE NUMBER OF SUBJECTS? >> IT WAS A SUBSTANTIAL NUMBER BUT I DON'T REMEMBER THE DETAILS. I'M SORRY. >> 130, WHICH IS A DECENT SIZE, I WOULD THINK. ANY OTHER COMMENTS ABOUT THAT MANUSCRIPT OR ANYTHING ELSE IN SECTION 2? IF NOT, WE'LL MOVE ALONG TO SECTION 3. THE FIRST PAPER IS AT THE BOTTOM OF PAGE 7, AND THAT SECTION GOES THROUGH PAGE -- QUITE A LOT. PAGE 11. QUESTION 3 IS ABOUT RISK FACTORS. >> HI, THIS IS CINDY LAWLER. I WOULD LIKE TO BRING ATTENTION TO THAT FIRST STUDY AND REMIND PEOPLE THAT THE LEAD AUTHOR, DANNY FALLON FROM JOHNS HOPKINS, PRESENTED SOME OF THIS DATA AT THE OCTOBER 2017 MEETING. I REALLY AM EXCITED ABOUT THIS STUDY BECAUSE YOU THINK IT HIGHLIGHTS A NEW APPROACH TO HELP US GAIN TRACTION IN UNDERSTANDING RESULTS -- >> I'M SORRY, WE'RE HAVING TROUBLE HEARING YOU. CAN YOU SPEAK A LITTLE BIT LOUDER? WE'RE GOING TO TRY TO ADJUST THE VOLUME ON OUR END BUT IT WOULD HELP IF YOU COULD SPEAK A BIT LOUDER. >> OKAY. JUST TO REMIND PEOPLE, DANNY FALLON, WHO PRESENTED THIS WORK AT THE -- BECAUSE I THINK IT PROVIDES A WAY FOR US TO GAIN TRACTION IN UNDERSTANDING HOW COMMON VARIATIONS FROM -- >> CINDY, WE REALLY CAN'T HEAR YOU. IF YOU'RE ON SPEAKER, COULD YOU PICK UP YOUR PHONE AND TALK DIRECTLY INTO THE MIC? >> OKAY. SORRY. IS THAT BETTER? >> A LITTLE BIT, BUT I THINK WE COULD STILL TURN UP THE VOLUME MORE ON OUR END. >> OKAY. I WILL TRY TO SPEAK LOUDLY. REMINDER THAT DANNY FALLON, THE LEAD AUTHOR, PRESENTED THIS WORK AT THE OCTOBER 2017 IACC MEETING. I'M EXCITED ABOUT IT BECAUSE IT PROVIDES A NEW APPROACH TO HELP US GAIN TRACTION IN UNDERSTANDING HOW COMMON VARIATION -- IDENTIFIED THROUGH GWAS CAN TELL US ABOUT THE UNDERLYING BIOLOGY, AS WE KNOW WITH COMPLEX DISORDERS, WE USUALLY HAVE A LOT OF SNPs WITH EACH ONE -- AND IT'S REALLY HARD TO DO A LOT WITH THAT. TYPICALLY YOU JUST TURN TO GETTING LARGER AND LARGER SAMPLES, WHICH HAS ITS OWN PROBLEMS. SO IN THIS CASE, WHAT DANNY'S GROUP DID IS BROUGHT TOGETHER DIFFERENT DATASETS, EPIGENETIC DATA, WHICH -- METHYLATION MAPS AVAILABLE IN DIFFERENT TISSUES FROM PERIPHERAL BLOOD, CORD BLOOD, LUNG AS A NEGATIVE CONTROL, AND SOME PUBLISHED METHYLATION DATA FROM FETAL BRAINS, AND LOOKED AT -- IDENTIFIED SNPs THAT CONTROL METHYLATION IN THOSE DIFFERENT TISSUES AND COMPARED THOSE METHYLATION PTLs WITH THE LIST OF GENES -- THE ASC RISK GENES ARISING FROM GWAS STUDIES, AND THAT -- LACKING AT THAT LOOKING AT THAT OVERLAMB, YOU CAN DO GENE ONTOLOGY AND HAVE SOME UNDERSTANDING THAT WAY, BUT AS IMPORTANTLY, BECAUSE YOU HAVE THOSE GENETIC VARIATION CONTROLLING METHYLATION, YOU ALSO KNOW SOMETHING ABOUT THE TARGETS, THE GENES OR THE AREAS OF THE GENOME THAT ARE -- WHOSE METHYLATION IS CONTROLLED, AND THOSE CAN BECOME NEW GENES THAT WE CAN EXPLORE FOR THEIR RELEVANCE TO AUTISM. SO I THINK SO I THINK THE ADVANCE IS REALLY HOW TO BRING TOGETHER DATASETS TO VERY QUICKLY, YOU KNOW, BRING MORE INFORMATION OUT OF THE DATA THAT WE HAVE AND SUGGEST NEW LEADS AND ALSO IT ADDRESSES WHAT'S A IS WE REALLY WANT TO KNOW ABOUT GENE EXPRESSION CHANGES IN BRAIN, BUT IN HUMAN STUDY, YOU HAVE TO RELY PRIMARILY ON SURROGATE TISSUE LIKE PERIPHERAL BLOOD, SO THAT CROSS TISSUE COMPARISON CAN HELP US UNDERSTAND HOW BET INVENTORY DO BETTER TO DO THAT, SO THE STUDY ITSELF WAS NOT A LARGE STUDY, BUT I THINK IT'S IMPORTANT BECAUSE IT HIGHLIGHTS A NEW APPROACH THAT CAN BE VERY USEFUL. >> THANK YOU, CINDY. ANY COMMENTS ABOUT THIS MANUSCRIPT? I WONDER IF YOU THINK THE MERGING OF GENETIC AND EP EPIGENETIC DATA, THIS CAN ALSO BE LOOKED AT ENVIRONMENTAL EFFECTS AND THEIR INTERACTION WITH GENES. CINDY, MAYBE YOU'RE ON MUTE? >> SORRY. I AGREE WITH YOU. I'M REALLY INTERESTED IN THIS BECAUSE EPIGENETICS IS IN A GREAT POSITION TO SORT OF MEDIATE THE EFFECTS OF ENVIRONMENTAL EXPOSURES ON GENE EXPRESSION DATA, SO WHEN YOU THINK ABOUT THE SORT OF INTERACTION OF GENES AND ENVIRONMENT, EPIGENETICS COULD BE A MAJOR PLAYER, AND AGAIN, THIS BEGINS TO HELP US UNDERSTAND HOW WE CAN INTEGRATE EPIGENETIC AND GENETIC DATA. >> GREAT. THANK YOU. OTHER COMMENTS ABOUT OTHER PAPERS IN THE GROUP 3? DAVID? >> I'D LIKE TO HIGHLIGHT THE PAPER ON PAGE 10 THAT GERI DAWSON NOMINATED, THE WANG AND CHAO ASSOCIATION BETWEEN MATERNAL USE OF FOLIC ACID SUPPLEMENTS DURING PREGNANCY AND RISK FOR AUTISM. I HAVE READ THIS PAPER NOT IN GREAT DETAIL BUT WAS ALSO IMPRESSED THAT IT BRINGS TOGETHER A HUGE AMOUNT OF EMERGING EVIDENCE THAT PRECONCEPTION USE OF FOLIC ACID IN MULTIVITAMINS CAN REDUCE THE RISK OF AUTISM. AGAIN, I THINK THIS IS IN A SENSORILY GOOD NEWS FROM THE EPIDEMIOLOGICAL WORLD, YET IT HASN'T TRICKLED DOWN TO COMMON USAGE. I KNOW SOME OF THE CONVERSATIONS I HAD WITH MY DAUGHTER AND SOME OF HER FRIENDS WHO ARE IN THIS SORT OF PREPREGNANCY AGE GROUP DURING THE HOLIDAYS, NONE OF THEM WERE AWARE OF THIS. SO I THINK TO THE EXTENT THAT WE CAN HIGHLIGHT THIS WOULD BE A BENEFIT TO THE NATIONAL COMMUNITY. AND I THINK THIS PAPER -- THERE WAS ANOTHER PAPER ON FOLIC ACID THAT WAS ALSO NOMINATED BUT I THINK THIS TOPIC NEEDS TO BE REALLY PUSHED FORWARD. >> ANYONE WANT TO SPEAK ABOUT THE OTHER FOLIC ACID PAPER BECAUSE I THINK IT IS RELEVANT TO THIS DISCUSSION. I CAN DO SO JUST FROM MY READ OF THE JUSTIFICATION. I THINK IT SHOWS THAT NOT ONLY DO YOU WANT TO KNOW -- TO GIVE FOLIC ACID BECAUSE IT WILL REDUCE RISK PARTICULARLY IN MY READ OF IT IS PERHAPS MOTHERS WHO WOULD HAVE INITIAL LOW LEVELS OF FOLATE IN THEIR SYSTEM, BUT THAT THERE IS ALSO A RISK OF SUPPLEMENTING THOSE WHO HAVE HIGH LEVELS OF FOLATE IN THE SYSTEM, ALTHOUGH I'D WANT TO AGAIN LOOK AT THAT PAPER MORE CLOSELY TO SEE HOW REAL THAT RISK IS. THE PAPER DESCRIBES A U-SHAPED RELATIONSHIP, MEANING IF YOU START OUT WITH NORMAL OR HIGH NORMAL LEVELS OF FOLATE, THEN SUM TAITION COULD INCREASE RISK AND YOU'D WANT TO BALANCE THAT OUT. SUPPLEMENTATION. I THINK THE META-ANALYSIS CLEARLY STATES THAT ON A POPULATION BASIS, FOLATE SUPPLEMENTATION WILL OVERALL REDUCE RISK SO THERE'S NO QUESTION THAT IT'S USEFUL. THEN DEPENDING UPON THE STRENGTH OF THE RESULTS IN THE OTHER PAPER, THOUGH, ONE MIGHT WANT TO RECOMMEND NOT JUST FOLATE SUPPLEMENTATION BUT ACTUALLY FOLATE TESTING BEFORE THAT. >> I THINK IT'S A GOOD POWNT AND I THINK POINT AND CLEARLY AN AREA THAT NEEDS TO HAVE MORE RESEARCH BECAUSE I DON'T KNOW WHAT THE PREVALENCE OF WOMEN WITH THE HIGH FOLATE LEVELS -- THIS IS ACTUALLY SOMETHING THAT CAME OUT IT THE NSAR MEETING A COUPLE YEARS BACK, AND I THINK IT ACTUALLY PRODUCED SORT OF A SCARE THAT MAYBE IT'S A BAD THING TO TAKE PRENATAL VITAMINS. SO CERTAINLY IT'S SOMETHING THAT WE NEED TO ADDRESS IF THERE COULD BE A DANGER FOR A CERTAIN PERCENTAGE OF WOMEN, BUT I DON'T THINK -- AND I PROBABLY MAY BE WRONG ABOUT THIS, BUT I DON'T THINK WE'VE IDENTIFIED WHICH WOMEN ARE AT RISK AND HOW THEY WOULD KNOW THEY'RE AT RISK, AND WHAT PERCENTAGE OF WOMEN THAT IS. BUT THE META-ANALYSIS CLEARLY SHOWS THAT IN GENERAL, IT'S A BENEFICIAL POLICY. >> LAURA, DO YOU KNOW ABOUT THE STRENGTH OF THE FINDING OF THE INCREASED RISK WITH HIGH LEVELS? >> I THINK THESE ARE EARLY FINDINGS. I HAVEN'T READ ABOUT THE STRENGTH OF THE EVIDENCE IN TERMS OF THE HIGH USE. I DO THINK IT'S EARLY PROMISING FIEFNEDDINGS FOR BOTH THE MATERNAL FEVER SWELTS SWELS THE AS WELL AS THE -- THIS BOSTON COHORT IS QUITE A ROBUST GROUP AND THEY'VE BEEN FOLLOWING THE COHORT FOR A NUMBER OF YEARS AND I THINK THERE'S VERY INTERESTING WORK THAT'S COMING OUT OF THE TEAM, AND I AGREE WITH YOU, I THINK IT'S SOMETHING WE WANT TO WATCH CAREFULLY AND FROM A PUBLIC HEALTH PERSPECTIVE, SHARE FINDINGS MORE BROADLY. IT'S NOT JUST AROUND NEURAL TUBE DEFECTS AND THOSE SORTS OF THINGS, BUT THERE ARE OTHER IMPLICATIONS. >> DO WE KNOW FROM EITHER OF THE META-ANALYSIS OR THE STUDY THAT IT'S NOT JUST ABOUT PREVENTING NEURAL TUBE DEFECTS AND, THEREFORE, YOU KNOW, SORT OF -- AND/OR -- ACID TOXICITY AND THAT IT'S REALLY BENEFICIAL FOR MORE THAN JUST THAT? SOMETIMES IT CAN GET LOST IN THINGS LIKE META ANALYSES. >> MY READING OF THE WANG ARTICLE IS THAT THEY TALK SPECIFICALLY ABOUT WE'VE STUDIED FOLIC ACID SUPPLEMENTATION TO PREVENT NEURAL DEFECTS, BUT THEY'RE LOOKING AT PARTICULARLY THIS HIGH RISK POPULATION SO I THINK THAT WAS THE FOCUS OF THIS STUDY IN PARTICULAR. >> THANK YOU. NINA. >> IT'S INTERESTING THAT MANY YEARS AGO THERE WAS NOTED A RELATIONSHIP BETWEEN INCREASE IN SERUM FOLATE AND DECREASED TRANSPORT OF FOLATE INTO RED CELLS AND FEVER, AND I WONDER IF THAT'S WHAT WE'RE SEEING IN SOME OF THIS. I JUST PULLED UP AN ARTICLE FROM THE 60s. SOMETIMES IT PAYS TO REMEMBER WHAT YOU LEARN DURING YOUR RESIDENCY. >> THAT'S INTERESTING, NINA. IT'S NOT SOMETHING THAT I'VE THOUGHT OF BEFORE. ANYTHING ELSE IN QUESTION 3? ALISON, GO RIGHT AHEAD. >> I JUST WANTED TO SPEAK TO THE STUDY ON PAGE 10 THAT I SUBMITTED FROM THOMAS' GROUP WHERE APPARENTLY I FAILED TO PROVIDE JUSTIFICATION, I APOLOGIZE, I THOUGHT I HAD, BUT THIS IS AN IMPORTANT STUDY IN OUR EFFORTS TO MOVE TOWARDS SUBCATEGORIZING AND SEGREGATING BY JEA KNOW TYPE FOR THE PURPOSE OF TRIALS AND ALSO INTERVENTIONS. THIS STUDY HAD 85 PATIENTS WITH DIFFERENT TYPES OF SHANK 3 DELETIONS, MCDERMOTT SYNDROME. SOME OF THEM HAD DELETION, SOME DUPLICATION, SOME REARRANGEMENTS AND IT LOOKED TO TRY TO DETERMINE PHENOTYPES BASED ON THOIS GENOTYPES. SO THERE WERE REALLY TWO INTERESTING THINGS THAT CAME OUT OF THIS PAPER THAT I RECALL. ONE WAS THAT THERE WAS A SUBGROUP THAT IN ADDITION TO HAVING THE SHANK THREE DELETION ALSO HAD COPY VARIATIONS AND LOCI AND THEY HAD A PARTICULAR PHENOTYPE. FINALLY THERE WERE FIVE GIRLS IN THE STUDY WHO HAD SHANK 3 DELETION BUT NO CLINICAL SYMPTOMS, AND SO THIS IS ADDITIONAL EVIDENCE FOR FEMALE PROTECTIVE EFFECT AND I THINK IT'S THE FIRST PIECE OF EVIDENCE FOR FEMALE PROTECTIVE EFFECT IN A KNOWN SUBPOPULATION, GENETIC SUBPOPULATION. >> THANKS. >> I'D LIKE TO SECOND THAT. I THINK THIS IS AMONG THE PAPERS THAT I'VE BEEN CONSIDERING, THIS ONE IS A VERY IMPORTANT PAPER. >> WE'LL MOVE ALONG TO QUESTION 4 WHICH COMPRISES NOMINATIONS ON PAGES 11 THROUGH 14. IN THIS SECTION, I THINK LAURA REALLY OUTDID HERSELF. ARE THERE COMMENTS OR QUESTIONS ON ANY OF THESE? THE ONE COMMENT I WOULD MAKE IS, DAVID, WITH REGARD TO YOUR SUBMISSION, THAT IT'S A REVIEW AND SO MAYBE -- WE TALKED ABOUT INCLUDING REVIEWS ONLY IF THEY REALLY DEVELOPED SOME NOVEL IDEA THAT'S REALLY IMPORTANT TO GET OUT THERE. SO I'M WONDERING ABOUT THE RATIONALE FOR PUTTING THAT ONE FORWARD. >> SURE. AND I REALIZED AFTER I SUBMITTED THAT GERI HAD ACTUALLY SUBMITTED IT THE ROUND BEFORE, SO CLEARLY WE BOTH THINK IT'S AN IMPORTANT REVIEW. I THERE'S GROWING RECOGNITION ABOUT THE IMPORTANCE OF SENSORY CHALLENGES AND THAT ANY PEOPLE WITH AUTISM TELL US THAT THEY ARE, ONE OF THE MOST IMPORTANT CHALLENGES, AND WE HAVE VERY LITTLE PUBLISHED DATA SHOWING THE STATE OF THE FIELD. IN TREATING THEM. SO I THINK WHAT'S INTERESTING ABOUT THIS REVIEW IS IT'S CLOSE TO NO RESULTS. IT'S VERY MODEST GAINS THAT DON'T SUSTAIN IN ADDRESSING SENSORY CHALLENGES FOR PEOPLE WITH AUTISM AND SO I THOUGHT IT REPRESENTED AN IMPORTANT CALL TO ACTION ABOUT WHERE WE SHOULD BE FOCUSING SOME INTERVENTION DEVELOPMENT EFFORTS MORE THAN THE USUAL KIND OF -- IT'S ALSO A VERY CAREFULLY DONE, RIGOROUS REVIEW. >> THANK YOU, DAVID. GERI, DID YOU WANT TO ADD ANYTHING TO THAT, ON THE PHONE? >> NO, NO, I HAVE NOTHING TO ADD, BUT I AGREE IT'S AN IMPORTANT STUDY. >> QUESTIONS AND IMHENTS OTHER ARTICLES PROPOSED UNDER QUESTION 4? >> SO IN TERMS OF IMPLICATIONS, I WOULD WANT TO HIGHLIGHT THE SCHOOL BASED INTERVENTION. I THINK IT'S INCREDIBLY IMPORTANT AS A SETTING FOR INTERVENTION. >> THAT'S THE FIRST ONE ON PAGE 11? >> SORRY, ON PAGE 11. I DO THINK IT'S VERY EARLY FINDINGS AND I WOULD SORT OF -- NOT AS IMPORTANT FINDINGS REGARDING THE IPHONE BASED APP FOR TOILET TRAINING, I THINK THAT'S IMPORTANT FOR FAMILIES BUT I DON'T THINK IT HAS THE SAME EFFECT THAN ANY OF THE OTHERS. >> THANK YOU. A COMMENT I WROTE DOWN TOO, IMPORTANT BUT IT'S REALLY A PILOT AT THIS POINT. WHEREAS THE SCHOOL BASED ONE IS MORE DEFINITIVE. OTHER COMMENTS ON THE TREATMENT, QUESTION FOUR? >> CAN I ASK LAURA ABOUT THE METFORMIN STUDIES WHICH YOU PRESENT THREE, ONE OF WHICH COMPRISES A RANDOMIZED TRIAL, THE SECOND I THINK IS AN EDITORIAL, AND THE THIRD IS AN OPEN LABEL TRIAL. WOULDN'T THE -- TRUMP THE RT -- TRUMP THE OTHER TWO? >> WE ALSO WANT TO KNOW THE NUMBER, THE NUMBER OF SUBJECTS IN THE RCTs, DO WE KNOW WHAT THE NUMBER IS IN THAT ONE? JENNIFER, DO YOU KNOW? >> HI. I'M SORRY, I'M HAVING PROBLEMS WITH MY COMPUTER. IT'S BEEN REBOOTING. SO I DON'T ACTUALLY HAVE THAT STUDY UP IN FRONT OF ME TO BE ABLE TO SPEAK TO IT. >> OKAY, NO PROBLEM. IF IT COMES UP BEFORE THE END OF THE DISCUSSION OR EVEN BEFORE THE END OF THE DAY, IT'S PROBABLY USEFUL FOR US TO HEAR FROM YOU, BUT THIS IS THE HAND IN ARTICLE PLACEBO CONTROLLED TRIAL FOR METFORMIN FOR OVERWEIGHT INDUCED BY ANTIPSYCHOTIC MEDICATION. REALLY THE QUESTION IS THE SAMPLE SIZE. >> OKAY. >> 61. >> 61? >> YES. IT'S A 16-WEEK PLACEBO CONTROLLED RANDOMIZED TRIAL IN 61 CHILDREN AND ADOLESCENTS 6 TO 17 YEARS OF AGE WITH AUTISM. >> THEN I GUESS THE OTHER QUESTION I'D HAVE WOULD BE THE CLINICAL SIGNIFICANCE OF THE WEIGHT LOSS. BECAUSE SOMETIMES SEES WEIGHT LOSS THAT WHILE STATISTICALLY SIGNIFICANT IS NOT CLINICALLY SIGNIFICANT, ALTHOUGH THAT'S ALSO THE CASE SOMETIMES IN THESE STUDIES, THERE ARE CLINICALLY SIGNIFICANT WEIGHT LOSSES. >> IT SAYS THAT THE -- THEY HAD LOWER BMI Z SCORES AND STATISTICALLY SIGNIFICANT IMPROVEMENTS ALSO NOTED IN SECONDARY BODY COMPOSITION MEASURES BUT NOT METABOLIC VARIABLES. THEY WERE ABLE TO MAINTAIN THEIR DECREASES IN BMI BUT DID NOT HAVE ADDITIONAL WEIGHT LOSS AFTER 16 WEEKS. THE Z SCORE WAS A CHANGE OF POINT -- MINUS .10. >> SO THAT'S ONE STANDARD DEVIATION. .1 FOR A Z SCORE IS PRETTY LOW. >> YEAH. THAT'S TRUE. >> ALL RIGHT. NONETHELESS, AN IMPORTANT ISSUE. >> GLAD I WAS ABLE TO CONTRIBUTE REMOTELY. >> THANK YOU. THEN WE'LL MOVE ON TO QUESTION 5, SERVICES. WE HAVE THREE SUBMISSIONS ON PAGES 15 TO 17. >> I'M SEEING MORE THAN THREE. >> I'M SORRY, DID I GET THAT WRONG? >> OR MAYBE THERE'S -- YEAH. >> SAMANTHA, ARE YOU IN THE PACKET THAT'S JUST THE OCTOBER TO DECEMBER SUBMISSIONS? >> OH, NO, I MUST -- I'M IN THE JANUARY THROUGH DECEMBER 1S. OKAY. I WILL JUST LOCK AT THE OTHER ONE. SO I WAS GOING TO SAY THAT THE TWO DRK -- THE FIRST ONE AND THE LAST ONE ARE EXTREMELY INTERESTING AND EXTREMELY IMPORTANT, PARTICULARLY I WOULD SAY THE LAST ONE, BECAUSE ONE OF THE THINGS THAT'S MOST IMPORTANT TO THE SELF ADVOCACY COMMUNITY IS OUR LEVEL OF SELF DETERMINATION, AND THE FINDINGS HERE ARE ACTUALLY EXTREMELY INTERESTING AND NOT OBVIOUS, THE FACT THAT PEOPLE ON THE AUTISM SPECTRUM SCORED LOWER IN AUTONOMY EVEN AFTER CONTROLLING FOR SELF REGULATION IS REALLY INTERESTING. >> SORRY, SAMANTHA, WHICH ARTICLE? BECAUSE THIS DOESN'T CORRESPOND TO THE ONE -- >> I'M LOOKING AT THE ONE ON PAGE 15. >> I THINK YOU HAVE AGAIN THE WRONG PACKET. THERE ARE THREE PACKETS. >> I'M SO SORRY. >> WHICH PACKET ARE YOU IN? >> I'M COMPLETELY CONFUSED. I WAS LOOKING AT THE JANUARY THROUGH OCTOBER 1. I'M SORRY. >> GOTCHA. ALL RIGHT. I'M JUST GOING TO MARK THAT ONE ANYWAY UP FOR ME. >> I REALLY LIKED IT. I SCORED VERY LOW ON FOLLOWING INSTRUCTIONS. [LAUGHTER] >> WE APOLOGIZE FOR THE CONFUSION. WE COULD HAVE MADE THIS CLEARER. QUESTION 5, PAGES 15 TO 17 OF THE PACKET THAT SAYS ON THE FIRST PAGE, OCTOBER TO DECEMBER. >> AND SO ON THE QUEUE PFAU WAS ANOTHER ONE I FLAGGED EARLIER ON 16. >> COPFAU, YES. >> ON HEALTH RELATED CHARACTERISTICS. IT'S WHAT JOHN AND I HAVE BEEN SAYING FOR A LONG TIME, THAT THESE CO-OCCURRING HEALTH CONDITIONS ARE AN ABSOLUTELY MAJOR FACTOR IN IMPROVING QUALITY OF LIFE FOR PEOPLE ON THE AUTISM SPECTRUM. I THINK THOSE FINDINGS WILL INSPIRE FURTHER RESEARCH. >> YEAH, AND I THINK IF THERE'S ONE THAT REALLY HITS THE NAIL ON THE HEAD FOR THAT PARTICULAR ISSUE, IT IS THIS ARTICLE WHICH SAYS THAT THE GENERAL QUALITY OF LIFE IS RELATED TO THESE OTHER ISSUES MUCH MORE SO -- >> EXACTLY. >> OR AT LEAST AS MUCH SO AS IT IS TO THE CORE AUTISM FEATURES. I THINK THAT REALLY GETS, JOHN, AT THE POINT YOU'VE BEEN TRYING TO MAKE, WHICH IS SORT OF PERIPHERAL TO THE OTHER PAPERS THAT WE TALKED ABOUT BUT REALLY CENTRAL TO THIS MANUSCRIPT. >> THAT POINT REALLY DOES DESERVE MENTION IN THE SUMMARY OF ADVANCES, AND MAYBE WE COULD SAY THAT WE HAVE BEGUN TO RECOGNIZE THE IMPORTANCE OF THAT BUT IT WILL TAKE A NUMBER OF YEARS TO CHANGE THE COURSE OF THE SHIP OF RESEARCH. AND THAT IS THE REASON THAT WE ARE DISCUSSING HERE AND YET WE HAVE SO FEW PAPERS TO REPORT BECAUSE OF THAT LAG IN TIME TO DO THE WORK. >> IT'S AN INTERESTING SUGGESTION. I MYSELF WOULD FEEL UNCOMFORTABLE WITH THAT ASSERTION IN THE SUMMARY OF ADVANCES BUT I THINK MORE TO THE POINT ASSERTION WOULD BE THAT THIS IS REALLY IMPORTANT BECAUSE IT RAISES THIS ISSUE. WE ACTUALLY -- IT TURNS OUT WE HAVE SEVERAL IN THIS PARTICULAR CYCLE THAT SPEAK TO THAT ISSUE AS YOU'VE HIGHLIGHTED, SO -- >> WHICH ARE YOU UNCOMFORTABLE? YOU'RE NOT UNCOMFORTABLE WITH THE ASSERTION THAT WE'RE MOVING TOWARDS MORE LIFESPAN RESEARH, ARE YOU? >> NO, NO. >> SO WE CAN SAY THAT. >> YES. THAT WOULD BE FINE. >> AND I THINK IF WE DON'T SAY SOMETHING LIKE THAT, I THINK WE WILL BE ROUNDLY CRITICIZED BY THE AUTISM COMMUNITY FOR NOT SPEAKING DEFINITIVELY ABOUT LIFESPAN ISSUES IN OUR REPORT. MAYBE ALISON AND SAM CAN WEIGH IN ON THAT, BUT THAT'S WHAT I THINK. >> I AGREE THAT WE CAN TALK ABOUT MOVING IN THE DIRECTION OF RESEARCH AND ALSO IF WE WANT TO PUT IT DIPLOMATICALLY, WE CAN SAY THAT THIS CONFIRMATION OF THE FACT THAT THESE ARE ISSUES THAT ARE CRITICAL TO QUALITY OF LIFE SHOULD BE TAKEN ACCOUNT IN FURTHER DECISIONS -- >> THAT'S A GOOD WAY. I DON'T THINK IT'S TRUE THAT THIS GROUP OR THAT MANY OF THE AGENCIES AND ORGANIZATIONS AROUND THE TABLE HAVE IGNORED OR ARE NOT CONDUCTING RESEARCH IN THIS AREA ANYMORE, WHEREAS A YEAR OR TWO, BEFORE WE STARTED TAKING UP THIS ISSUE AND BEFORE IT GOT INCORPORATED INTO OUR OVERALL STRATEGIC PLAN, I THINK THAT WOULD HAVE BEEN MORE ACCURATE. SO THAT'S ALL THAT I'M TRYING TO SAY. BUT I DO AGREE THAT HIGHLIGHTING THROUGH A SUMMARY OF EVENTS -- IF I WAS GOING TO PICK ONE TO HIGHLIGHT IN THE SUMMARY OF ADVANCES THAT SPEAKS TO THE ISSUE OF CO-OCCURRING CONDITIONS AND THEIR IMPACT, THIS IS THE MANUSCRIPT THAT I WOULD WANT TO CHOOSE TO INCLUDE, AND I THINK IT WOULD BE GREAT TO INCLUDE IN THE DISCUSSION -- IN THE LAY SUMMARY HOW IT IS INDEED A CONFIRMATION OF THE IMPORTANCE OF CONSIDERING CO-OCCURRING CONDITIONS AND OF INCREASED RESEARCH INTO THESE AND OTHER LIFESPAN ISSUES. SOUND GOOD? OKAY. QUESTION SIX, LIFESPAN ISSUES. ALL RIGHT. THIS IS THE FINAL ONE FOR WHICH WE HAVE NOMINATIONS THIS TIME AROUND, AND THERE ARE -- THESE ARE ON PAGE 17 AND 18, THERE ARE FOUR SUBMISSIONS. JULIE, YOU SHOULD FEEL FREE TO SPEAK UP ON THE PHONE. I THINK YOU HAD TWO NOMINATIONS IN THIS SECTION. >> SO I WOULD BE INTERESTED IN HEARING WHAT THE CLINICIANS HAVE TO SAY ABOUT THE MAN DEARTICLE, BUT AS SOMEBODY WHO DOES RESEARCH THAT INCLUDES ADULTS ON A FAWRLY REGULAR BASIS, SOMETHING THAT'S BEEN A REAL ISSUE IS NOT HAVING AN INFORMANT REPORT MEASURE, DIAGNOSTIC MEASURE THAT WE FEEL REALLY GOOD ABOUT FOR AN ADULT POPULATION. SO I THOUGHT THE MAN DEARTICLE WAS REALLY PROMISING IN TERMS OF THE SORT OF INITIAL PSYCHOMETRICS OF A NEW INFORMANT REPORT DIAGNOSTIC MEASURE DEVELOPED SPECIFICALLY FOR ADULTS. THE SAMPLE SIZE IN TERMS OF THEIR POPULATION, SO THEY HAD AN AUTISM GROUP, THEY HAD A CLINICAL GROUP THAT HAD OTHER MENTAL HEALTH CONDITIONS AND THEN SORT OF A NON-CLINICAL GROUP. I THINK THERE WAS ABOUT 50, 40 TO 50 PER GROUP, IF I'M REMEMBERING THAT RIGHT, BUT THE SENSITIVITY AND THE SPECIFICITY WERE REALLY GOOD. IT SEEMED LIKE IT WAS MUCH EASIER TO ADMINISTER. AND AS SOMEBODY WHO'S NOT A CLINICIAN, I THOUGHT IT SEEMED VERY PROMISING. >> THIS IS SAM. ANY STUDY ON ASSESSING AUTISM IN ADULTS IS GOING TO BE VERY INTERESTING TO ME. IT'S SOMETHING THAT WE'VE BEEN EXTREMELY CONCERNED ABOUT THE FACT THAT WE DON'T HAVE VERY GOOD MEASURES. I DID FIND IT INTERESTING THAT PEOPLE WITH INTELLECTUAL DISABILITY WERE EXCLUDED. I GUESS IT MAKES SENSE IF YOU HAVE SUCH A LOW SAMPLE SIZE, BUT WE REALLY WANT TO MAKE SURE THAT FURTHER RESEARCH INCLUDES PEOPLE WITH INTELLECTUAL DISABILITY BECAUSE THIS IS A GROUP THAT'S ALSO VERY DIFFICULT TO DIAGNOSE IN ADULTHOOD AND AUTISM GETS MISSED IN THIS GROUP. AND I'D ALSO BE INTERESTED, IT DOESN'T SAY HERE BUT I'D BE INTERESTED TO SEE WHAT THE RACIAL AND GENDER DIVERSITY HERE, IT SAYS 50 ADULTS -- NOT 50 ADULTS. IT DOESN'T HAVE A SAMPLE SIZE. BUT IT WOULD BE INTERESTING TO SEE IF THERE WOULD BE VARIATIONS IN RACE AND GENDER. >> I OBVIOUSLY RECOGNIZE THE INCREDIBLE UTILITY OF DEVELOPING AN INSTRUMENT THAT WOULD ASSIST IN THE DIAGNOSIS AND SEVERITY STATE YOUR STAGING OF ADULTS. IT'S NOT CLEAR TO ME THAT THIS REALLY DEFINITIVELY DOES IT, AND I WOULD LIKE TO SEE FOR A SUMMARY OF EVENTS SOMETHING A LITTLE BIT MORE DEFINITIVE THAN -- SAMANTHA, I THINK YOU RAISE REALLY IMPORTANT POINTS ABOUT THE DIVERSITY AND IF IT'S A SMALL SAMPLE SIZE, GENERALLY SMALL SAMPLE SIZES, EVEN IF THEY HAVE REPRESENTATION FROM DIVERSE GROUPS, ARE NOT GOING TO BE ABLE TO VALIDATE MEASURES IN THOSE DIVERSE GROUPS. EVEN WITH A SMALL SAMPLE SIZE, IT'S HARD TO KNOW HOW GOOD THE VALIDATION IS OVERALL. >> I WOULD BE INTERESTED -- >> THIS IS JULIE AGAIN. THAT'S FAIR AND AS I'M LOOKING A LITTLE CLOSER AT IT AGAIN, THE SAMPLE SIZES ARE ACTUALLY EVEN A LITTLE SMALLER THAN WHAT I HAD REPORTED. LOOKS LIKE IT'S 39 IN THE AUTISM GROUP, 29 IN THE NON-CLNICAL COMPARISON AND 20 IN THE CLINICAL COMPARISON, SO IT IS PRETTY SMALL. I THINK I GOT REALLY EXCITED ABOUT THE POSSIBILITY OF USING IT, BUT YOU'RE RIGHT, I THINK IT'S PROBABLY NOT A DEFINITIVE STUDY OF THIS MEASURE. >> I'M REALLY EXCITED ABOUT IT TOO. >> I'M ACTUALLY CURIOUS ABOUT THE IS SASSON ARTICLE THAT DAVID SUBMITTED. >> ME TOO. >> DISCLOSURE OF AUTISM, SO I'M READING THIS AS SAYING THAT IF A PERSON DISCLOSES AN AUTISM DIAGNOSIS, IT ACTUALLY IMPROVES OTHER PEOPLE'S PERCEPTION OF THE PERSON. DAVID, DO YOU HAVE MORE TO SAY ABOUT THIS? >> SO THIS WAS A STUDY ACTUALLY OF TYPICALLY DEVELOPING ADULTS WHO ARE PRESENTED WITH CHARACTERISTICS OF ADULTS AND WITH AND WITHOUT AUTISM AND WE'RE ASKED FOR THEIR IMPRESSIONS OF FAVORABLE OR UNFAVORABLE IMPRESSIONS, THE OLD WORK AROUND STIGMA, AND WHEN THEY WERE TOLD THAT THE ADULT HAD AUTISM, THEIR IMPRESSIONS OF THE ADULT BECAME MUCH MORE FAVORABLE. SO WE'VE TALKED ABOUT SIGMA A LOT IN THIS GROUP. IT'S VERY DIFFICULT TO DO RIGOROUS STUDIES OF STIGMA, AND I REALLY LIKED THAT THIS WAS AN ATTEMPT TO DO THAT AND ESPECIALLY GIVEN THE CHALLENGES I THINK PEOPLE WITH DISABILITIES AND DISABILITIES THAT ARE NOT ALWAYS VISIBLE HAVE WITH REGARD TO WHETHER TO DISCLOSE THAT THIS OFFERED SOME PROMISING FIRST EVIDENCE THAT DISCLOSURE MAY BE USEFUL IN ENVIRONMENTS LIKE THE WORKPLACE OR SOCIAL SITUATIONS. >> AND WERE THE -- NOT THE SUBJECTS BUT THE PEOPLE PRESENTED TO THE SUBJECTS, WERE THEY FICTIONAL OR WERE THEY REAL PEOPLE ON THE AUTISM -- BASED ON REAL PEOPLE ON THE AUTISM SPECTRUM? OR WERE THEY JUST COMPLETELY NEUTRAL? >> GO ALONG SON. >> ALISON. >> IT SAYS IN THE JUSTIFICATION THIS IS THE FIRST STUDY TO DEMONSTRATE THIS. IN FACT, THERE WAS A STUDY PRESENTED AT NSAR IN SAN SEBASTIAN THAT WE HIGHLIGHTED AT THE PRESS CONFERENCE THAT CAME OUT OF WENDY GOLDBERG'S GROUP AT UC IRVINE, THAT STUDIED ACTUAL PEOPLE, NOT IMAGES, AND STUDIED FIRST IMPRESSIONS OF NON-DISABLED COLLEGE STUDENTS, A WHETHER DISCLOSURE BY COLLEGE STUDENT PEERS WHO HAD AUTISM WAS POSITIVE OR NEGATIVE. IT SIMILARLY SHOWED THEY WERE RECEIVED BETTER AND HAD A BETTER EXPERIENCE IN THEIR COLLEGE ENVIRONMENT IF THEY DISCLOSED. >> WHAT I LIKED ABOUT THIS PAPER AND HEARING ABOUT IT AND HEARING ABOUT THAT RESULT AS WELL IS IT'S ACTIONABLE, AND THE QUESTION I WOULD HAVE FOR THOSE WHO'VE READ IT OR MAYBE EACH FOR THE AUTHORS IS, IF YOUR PATIENT OR LOVED ONE HAD AUTISM AND THEY WERE HEADED OFF TO COLLEGE OR INTO THE WORK ENVIRONMENT, BASED ON THE STRENGTH OF THESE RESULTS, WOULD YOU SAY, OH, YOU SHOULD DEFINITELY TELL THEM THAT YOU HAVE AUTISM BECAUSE YOU'LL BE TREATED BETTER BECAUSE OF IT. THERE ARE REASONS WHY WE AUTOMATICALLY REFLEXIVELY THINK DISCLOSING IS GOING TO LEAD TO INCREASED STIGMA, BUT IN THE CONTEXT OF DISABILITY THAT MAY NOT BE EVIDENT BUT THAT DEFINITELY IN SOCIAL SITUATIONS AFFECTS INTERACTIONS, KNOWLEDGE ON THE PART OF THE OTHER INDIVIDUAL, YOU MIGHT UNDERSTAND WHY THAT MIGHT RESULT IN IMPROVED PERCEPTIONS, OH, THEY'RE NOT JUST -- PARDON THE PEJORATIVE, THEY'RE NOT JUST WEIRD, THEY HAVE A DISABILITY. I WISH WE COULD ALWAYS THINK THAT WAY ABOUT EVERYONE WHO WE THINK OF AS WEIRD, BUT IN THIS CASE, IN PARTICULAR, THIS WOULD BE EVIDENCE IN SUPPORT OF IT, THE QUESTION IS HOW STRONG IS THAT EVIDENCE AND DO WE, THEREFORE, WANT TO PUT IT OUT THERE. BECAUSE IF WE PUT IT OUT THERE, WE'RE ESSENTIALLY SAYING THE EVIDENCE IS STRONG ENOUGH THAT WE SHOULD THINK ABOUT RECOMMENDING PEOPLE TO DISCLOSE THEIR DIAGNOSIS. JOHN. >> JOSH, I WOULD AGREE THAT THIS IS LIKELY A CORRECT OBSERVATION. I JUST WOULD CHALLENGE THE CLAIM FIRST STUDY TO DEMONSTRATE THAT DISCLOSURE IMPROVES THE PERCEPTION OF OTHERS. THE FACT IS, FOR THE ENTIRE TIME, WE HAVE HAD MASTER OF FINE ARTS DEGREES IN CREATIVE WRITING. THE PROFESSORS HAVE TAUGHT THAT DISCLOSURE OF VULNERABILITY AND WEAKNESS MAKES THE WRITER MORE APPEALING. FOR AT LEAST 200 YEARS, THAT HAS BEEN RECOGNIZED IN THE COMMUNITY OF WRITERS. SO TO SUGGEST THAT AUTISM IS SOMEHOW NEW AND DIFFERENT, I THINK IS DISINGENUOUS. >> THAT IS IN SOME WAYS NEW AND DIFFERENT BECAUSE WE KNOW THAT WITH DISCLOSURES OF OTHER TYPES OF MENTAL HEALTH DIAGNOSES THAT CAN BE, YOU KNOW, VERY DIFFERENT IF YOU JUST SAY THIS PERSON HAS SCIZ, SCHIZOPHRENIA, YOU MIGHT HAVE A VERY DIFFERENT RESULT, AND SO THE FACT THAT IT'S DIFFERENT FOR AUTISM IS INTERESTING. ON THE OTHER HAND, IF THIS IS, IN FACT, YOU KNOW, NOT NEW AND THE STUDY ALISON MENTIONED IS EQUIVALENT TO IT -- >> I JUST THINK IT'S A HUMAN CONDITION THING, REVEALING A VULNERABILITY OR A WEAKNESS WILL CAUSE PEOPLE TO TREAT YOU WITH MORE COMPASSION, WHATEVER THAT HAPPENS TO BE. >> UNTIL THEY STOMP ON YOU. I AM HAPPY TO REVIEW THE ARTICLE AGAIN WITHIN THE CONTEXT OF BOTH ITS NOVELTY AND RIGOR AND COME BACK TO THE COMMITTEE, AND CERTAINLY -- AND TO SAY THAT THIS IS EITHER THE FIRST OR SECOND STUDY IN A INDEX MEDICUS JOURNAL AS OPPOSED TO SHAKESPEAREAN. >> I'M NOT CHALLENGING THAT IT'S VALUABLE, I JUST WANT TO PUT IT IN CONTEXT, THAT'S ALL. >> ACTUALLY I THINK THE COMMITTEE WOULD APPRECIATE IF YOU COULD COME BACK TO US WITH IT, AND ALISON, MAYBE IF YOU COULD RESPOND WHEN IT GETS SENT AROUND WITH THE GOLDBERG STUDY, BECAUSE TO ME, ANY TIME WE HAVE AN ACTIONABLE ARTICLE, WE HAVE TWO RESPONSIBILITIES. THE FIRST IS TO ENSURE THAT WE BELIEVE THE STRENGTH OF THE EVIDENCE, BECAUSE PEOPLE ARE GOING TO RESPOND TO OUR ACTIONABLE ITEM, AND THEN THE SECOND IS TO GET IT OUT THERE BECAUSE WE WANT PEOPLE TO KNOW. IN WORKING WITH PATIENTS IN MY PRACTICE, I ALWAYS ADVOCATED FOR ACTUALLY -- FOR DISCLOSURE, BUT ALSO ALWAYS HAD A VERY SIGNIFICANT CONVERSATION WITH THE PATIENTS ABOUT WHAT THAT DISCLOSURE MEANS AND ACKNOWLEDGE THAT WE DON'T KNOW, BECAUSE I DIDN'T TREAT PATIENTS WITH AUTISM, I TREATED ADULTS WITH OTHER ILLNESSES AT LEAST TO MY KNOWLEDGE, THEY DIDN'T HAVE AUTISM, AND THERE ARE ALWAYS ISSUES ABOUT THAT, BUT IF I HAD HAD EVIDENCE THAT SAID OH, IN A WORKPLACE ENVIRONMENT, DISCLOSURE OF DIAGNOSIS, BIPOLAR DISORDER ACTUALLY IMPROVES OTHER PEOPLE'S PERCEPTIONS OF YOU, THAT WOULD HAVE BEEN -- FOR THOSE LISTENING, WE DON'T HAVE EVIDENCE TO MY KNOWLEDGE, BUT THAT WOULD HAVE BEEN A STRONGER RECOMMENDATION ON MY PART. SO I THINK GETTING THIS OUT THERE IF IT IS RIGOROUS, IT'S IMPORTANT. >> I WOULD ALSO WANT TO SEE THE BREAKDOWN OF PERCEPTIONS. IS THE PERSON SEEN AS MORE FRIENDLY, MORE TRUSTWORTHY, MORE COMPETENT, MORE WORTHY OF RESPECT, MORE POWERFUL? THESE ARE ALL VERY DIFFERENT PERCEPTIONS AND AS ANYONE WHO SELF DISCLOSED WILL KNOW, YOU MAKE A CALCULATION ABOUT WHICH PERCEPTION YOU CARE ABOUT THE MOST, SOMETIMES YOU DO GET DINGED ON PERCEPTIONS OF COMPETENCE BUT YOU DON'T GET DINGED ON PERCEPTIONS OF FRIENDLINESS OR TRUSTWORTHINESS. PEOPLE MIGHT ASSUME, OH, THAT PERSON IS NOT BEING UNFRIENDLY, SHE'S AUTISTIC, THEN YOU'RE SEEN AS MORE FRIENDLY, YOU MIGHT BE SEEN AS NOT SOMEONE THAT IS GOING TO BE GOOD AT A PARTICULAR TASK. SO THOSE ARE ALL THINGS THAT A PERSON THINKING OF SELF DISCLOSING WOULD WANT TO KNOW ABOUT IN TERMS OF THOSE PERCEPTIONS. >> KEVIN? >> I DON'T WANT TO KIND OF BEAT UP ON A DEAD HORSE HERE, BUT ONE OF THE THINGS THAT I THINK KIND OF NEEDS TO BE DONE IN THIS AREA IS MORE OF AN IMPLICIT ASSESSMENT OF STIGMA, KIND OF WATCHING PEOPLE REACT IN TERMS OF HOW THEY STATE THEY BELIEVE VERSUS WHAT THEY WOULD ACTUALLY THEN DO AND HOW THEY ACT, KIND OF THE IDEA OF UNTIL THEY STOMP ON YOU, VERSUS, OH, I'M VERY ACCEPTING OF YOU, AS LONG AS YOU'RE NOT TAKING AN IMPORTANT POSITION OR KIND OF WATCHING THE SELF DISCLOSURE AND PEOPLE' INTEREST IN -- IT KIND OF DEPENDS ON WHAT PEOPLE THINK OF YOU BEFORE YOU BEGIN THE PROCESS OF SELF DISCLOSURE AND TO WHAT END THEY HOPE YOU MIGHT BE USEFUL. YOU THINK ABOUT THE RECENT MEDIA ATTENTION AROUND DONALD TRUMP'S PHYSICAL EXAM RECORD, FOR EXAMPLE, IT'S KIND OF A -- SOME PEOPLE WERE HOPING FOR SOME SORT OF MENTAL HEALTH DIAGNOSIS AND SOME -- FOR DIFFERENT REASONS AND SOME PEOPLE WERE HOPING FOR A CLEAN BILL OF HEALTH. WOULD SELF DISCLOSURE HELP OR HURT? IT DEPENDS ON YOUR ORIENTATION BEFOREHAND. SO I THIRNG THINK THAT THAT'S SUCH A COMPLICATED FACTOR THAT I DON'T KNOW IF THIS STUDY, EVEN IF THE RESULTS WERE KIND OF VERY MUCH TRUE, WOULD BE ACTIONABLE, BECAUSE OF THIS WHOLE ISSUE OF IMPLICIT ATTITUDES TOWARDS MENTAL HEALTH THAT AREN'T REALLY MEASURED IN IT. >> I STILL THINK ESPECIALLY IF IT DOES BREAK DOWN THE DIFFERENT KINDS OF PERCEPTIONS, IT GIVES PEOPLE INFORMATION THAT THEY CAN USE TO MAKE A DECISION, AND I THINK THAT'S VERY IMPORTANT. >> SO I WANT TO POINT OUT ACTUALLY, AND WE'RE ACTUALLY A TINY BIT OVER BUT THAT'S FINE, THAT I ENCOURAGE ALL THE COMMITTEE MEMBERS BEFORE THEY VOTE TO LOOK INTO THE PAPERS THAT WE'VE NOMINATED HERE THEMSELVES, SO SAMANTHA, YOU SHOULD FEEL FREE TO LOOK THAT PAPER UP, AND IF YOU CAN'T ACCESS IT BECAUSE YOU DON'T GET ACCESS, THEN WE CAN ACCESS IT FOR YOU AND SEND YOU A COPY, BUT JUST CONTACT SUSAN'S OFFICE AND TO HELP YOU MAKE THE JUDGMENT YOURSELF, YOU CAN LOOK INTO IT AND SEE WHAT MEASURES THEY DID MEASURE REGARDING POSITIVITY, AND CERTAINLY THOSE THAT YOU'RE THINKING ABOUT VOTING FOR IF YOU HAVE CONCERNS ABOUT THE RIGOR, LOOK AT UR IT YOURSELF BEFORE YOU CAST YOUR VOTE, IF YOU WILL. THE FINAL THING I WOULD SAY IS THAT I HOPE WE'D HAVE TIME BUT WE DON'T HAVE TIME TO RE-GO OVER BUT REMEMBER THESE ARE NOT THE ONLY ONES NOMINATED SO THAT'S WHY YOU HAVE THE PACKET THAT INCLUDES ALL THE NOMINATIONS AS JANUARY THROUGH DECEMBER, THAT'S THE PACKET THAT I WOULD WANT YOU TO FOCUS ON WHEN YOU RECEIVE YOUR BALLOT, IF YOU WILL, AND THAT YOU CHOOSE THE PAPERS THAT YOU THINK ARE MOST IMPORTANT FOR INCLUSION. WHEN YOU DO SO, I WILL ASK YOU TO TRY TO, AS BEST YOU CAN, LOOK AT ALL SEVEN AREAS. WE DO LIKE TO TRY TO INCLUDE ADVANCES IN AS MANY OF THEM AS WE CAN GET CONSENSUS AROUND AS POSSIBLE, SO DON'T JUST LOOK AT YOUR FAVORITE AREA, SERVICES OR ETIOLOGY, TRY TO LOOK AT ALL SEVEN AND MAKE A DETERMINATION ABOUT THE QUALITY AND IMPACT OF THE MANUSCRIPTS IN THOSE SECTIONS. OKAY. SO THANK YOU VERY MUCH FOR THIS ROBUST DISCUSSION. WE ARE GOING TO TAKE A 10-MINUTE BREAK. WE'RE GOING TO COME BACK AT -- WELL, MAYBE 11:17, AND RESUME JUST A COUPLE MINUTES LATE FOR THE COMMITTEE BUSINESS. WE NOW HAVE COMMITTEE BUSINESS. I WANT TO LET EVERYONE KNOW, I'M GOING TO HAVE TO LEAVE ABOUT 10 MINUTES BEFORE NOON BECAUSE I HAVE AN APPOINTMENT ON CAMPUS DURING THE NOON HOUR. I'LL BE BACK FOR THE PUBLIC COMMENT SESSION AT 1:00. >> WE'RE READY FOR COMMITTEE BUSINESS. JUST WANT TO START OFF BY AGAIN THANKING STAFF, THANK YOU TO ALL OF THEM FOR ALL THEIR HARD WORK. WANTED TO GIVE YOU A BRIEF UPDATE ON THE 2016 ASD RESEARCH PORTFOLIO ANALYSIS TO LET UR KNOW OUR TEAM IS COLLECTING DATA FOR THE PORTFOLIO ANALYSIS. USING THESE DATA, WE'RE GOING TO BE COLLABORATING WITH THE FOUNDATION AUTISTICA IN THE UK AND THE CANADIAN GOVERNMENT TO DO THE FIRST INTERNATIONAL INTERNATIONAL AUTISM PORTFOLIO ANALYSIS. WE ARE PLANNING TO PRESENT THE PRELIMINARY RESULTS OF THIS ANALYSIS AT THE NSAR MEETING IN MAY 2018, AND WE HOPE THAT IT WILL STIMULATE BROADER INTERNATIONAL PARTICIPATION IN FUTURE YEARS. SO WHEN THAT INFORMATION IS AVAILABLE, WE WILL BE PRESENTING IT HERE AT IACC AS WELL AND WE LOOK FORWARD TO THAT AND WHAT WE CAN LEARN FROM THESE OTHER COUNTRIES THAT ARE ALSO WORKING HARD ON AUTISM. I ALSO WANTED TO GIVE YOU A BRIEF UPDATE FROM MY OFFICE ABOUT THE AUTISM CARES ACT REPORT TO CONGRESS. SO THIS IS A REPORT THAT IS REGARDING IN THE AUTISM CARES ACT. THERE WAS ANOTHER REPORT REQUIRED WHICH WE TALKED ABOUT LAST TIME, THE REPORT ON TRANSITION AGE YOUTH AND YOUNG ADULTS. THIS IS THE SECOND REPORT THAT'S REQUIRED, IT'S DUE IN SEPTEMBER SEPTEMBER 2018. SO MY OFFICE IS GOING TO BE COORDINATING THIS AND WE'VE BEGUN THE PREPARATION OF THIS REPORT COLLECTING DATA FROM ALL THE RELEVANT FEDERAL AGENCIES. WHEN THIS REPORT COMES OUT, WE WILL ALSO SHARE IT WITH THE IACC BUT WANTED TO LET YOU KNOW IT'S UNDERWAY AND ANY FEDERAL MEMBERS WHO ARE HERE THAT HAVE QUESTIONS ABOUT THE DATA CALL CAN DIRECT THOSE QUESTIONS TO OUR OFFICE AND WE WILL KEEP ALL OF THE AGENCIES INFORMED OF PROGRESS ON THIS. I ALSO WANTED TO HIGHLIGHT THAT THE SOCIAL SECURITY ADMINISTRATION HAS A REQUEST FOR INFORMATION OUT RIGHT NOW ON STRATEGIES TO IMPROVE ADULT OUTCOMES FOR YOUTH RECEIVING SSI. AND THE COMMENTS ARE DUE BY FEBRUARY 2ND. WE PUT THE WEB LINK HERE ON THIS SLIDE AND ALSO HAVE IT UP ON THE IACC WEBSITE BUT IF ANYONE NEEDS IT SEPARATELY, YOU CAN SEND ME AN EMAIL AND WE'LL BE HAPPY TO SEND THAT TO YOU SO WE CAN HELP OUT OUR COLLEAGUES AT THE SOCIAL SECURITY ADMINISTRATION. SO THE MAIN TOPIC TODAY THAT WE'RE GOING TO BE TALKING ABOUT IS THE IACC WORKING GROUP. WERE THERE ANY QUESTIONS ABOUT ANYTHING I MENTIONED ALREADY? OKAY. SO TALKING ABOUT WORKING GROUPS, SO THE IACC AS YOU KNOW VOTED PREVIOUSLY TO CONVENE THREE WORKING GROUPS ON ISSUES OF CRITICAL IMPORTANCE TO THE COMMUNITY, BETWEEN JANUARY 2018 AND THE END OF THIS IT LAITION OF THE IACC, WHICH WILL BE SEPTEMBER 2019. AND AMONG THE THREE TOPICS, THE FIRST ONE IS IMPROVING HEALTH OUTCOMES FOR INDIVIDUALS ON THE AUTISM SPECTRUM, AND THAT ONE IS GOING TO BE STARTING NOW. AND WE ALSO IN THE FUTURE WILL BE DOING WORKING GROUPS ON HOUSING AND SAFETY, SO WE WILL BE DOING THOSE IN A STAGGERED FASHION, FIRST GETTING THIS ONE OFF THE GROUND TO GET IT GOING ON ITS PRODUCTS. SO THE CO-CHAIRS WHO STEPPED FORWARD TO HELP US ARE DR. DAVID AMARAL AND DR. JULIE TAYLOR, SO WE REALLY APPRECIATE THEIR WILLINGNESS TO HELP LEAD THIS GROUP. THE SCOPE THAT WE DISCUSSED INCLUDES ALL OF THESE DIFFERENT TOPICS INCLUDING HEALTH AND GENERAL WELLNESS FOR INDIVIDUALS WITH ASD. CO-OCCURRING CONDITIONS AND PREVENTIVE APPROACHES TO ADDRESS THEM, ISSUES SUCH AS OBESITY, CO-OCCURRING MENTAL HEALTH CONDITIONS, PREMATURE MORTALITY WHICH INCLUDES CAUSES SUCH AS EPILEPSY, SUICIDE AND CHRONIC HEALTH CONDITIONS, PATIENT PROVIDER INTERACTIONS, MEDICAL PROVIDER -- OR MEDICAL PRACTITIONER TRAINING, INCLUDING INCREASING UNDERSTANDING OF AUTISM AMONG PHYSICIANS SUPPORTING COMMUNITY DOCTORS WHO PROVIDE MEDICAL CARE FOR ADULTS WITH AUTISM AND PARENTAL AND FAMILY MENTAL HEALTH. I DON'T KNOW AT THE MOMENT IF THERE'S ANYTHING ELSE THAT THE COMMITTEE FEELS IS IMPORTANT THAT NEEDS TO BE ADDED TO THAT LIST THAT IS OF THE SAME LEVEL. IF YOU DO HAVE ANYTHING TO ADD -- ALISON? >> I WOULD SUGGEST ADDING SELF INJURIOUS BEHAVIORS WHICH IN MANY CASES LEADS TO INPATIENT HOSPITALIZATION AND VERY NEGATIVE WELLNESS. >> SO YES, AND I THINK THAT COULD BE AN EXAMPLE UNDER THE MENTAL HEALTH CONDITIONS OR CO-OCCURRING CONDITIONS? >> I DON'T KNOW IT'S A MENTAL HEALTH CONDITION, I WOULD JUST LIKE TO SEE IT -- >> HIGHLIGHTED IN SOME WAY, AS AN ISSUE. >> I WONDER IF WE SHOULD EXPAND THAT, ALISON, TO ADDRESS VIE VIOLENT BEHAVIOR IN GENERAL, BECAUSE I THINK THAT'S IGNORING AUTISTIC PEOPLE WHO ARE AGGRESSIVE TOWARDS OTHERS, AND I DON'T THINK WE SHOULD DO THAT. >> SO THOSE WOULD BE A COUPLE OF PARTICULAR AREAS THAT YOU WOULD WANT TO INCLUDE. ANYTHING ELSE THAT YOU FEEL MIGHT NOT BE SUFFICENTLY HIGHLIGHTED HERE? >> I'M NOT SURE THAT I WOULD CONSIDER BEHAVIOR TO BE PART OF WHAT I WOULD SEE AS OVERALL HEALTH. SELF INJURIOUS BEHAVIOR, I WOULD AGREE, AGGRESSION TOWARDS OTHERS, I WORRY THAT WE MIGHT GET SIDETRACKED FROM OTHER THINGS THAT PEOPLE ARE REALLY CONCERNED ABOUT. IT'S NOT THAT IT'S NOT A SEER YUTION CONCERN, WE JUST THINK THAT IT TENDS TO BE ADDRESSED IN OTHER CONTEXTS OTHER THAN HEALTH AND WELLNESS. >> I THINK YOU CAN MAKE THE CASE THAT AGGRESSION TOWARDS OTHERS IS ANOTHER CAUSE OF INPATIENT HOSPITALIZATION WHICH THERE HAVE BEEN SEVERAL REALLY DISTURBING JOURNALISTIC REPORTS ABOUT PEOPLE LANGUISHING IN INPATIENT HOSPITALIZATION AND THERE NOT BEING ENOUGH CAPACITY TO SERVE THE POPULATION THAT NEEDS THIS KIND OF TREATMENT, SO I THINK WE COULD INCLUDE IT. >> AND SOME OF THE AGGRESSIVE BEHAVIORS ARE ALSO A PART OF INTERVENTION WORK THAT'S BEING DONE AS WELL SO THAT ANGLE OF IT MIGHT BE RELEVANT TO THIS. BUT IT ALSO MAY BE RELEVANT TO THE SAFETY WORKING GROUP THAT WILL BE WE'LL BE DOING IN THE FUTURE AS WELL, SO WE'LL TAKE NOTE OF THAT. ANYTHING ELSE, DAVID? >> SUSAN, ONE THING I THINK COULD BE ADDED IS THE DISSEMINATION PIECE OF THIS, BECAUSE IF WE TALK ABOUT THIS AND COME UP WITH A CONSENSUS WORK GROUP AND IT DOESN'T GO U.N. WHERE, I THINK WE WOULDN'T HAVE ACCOMPLISHED OUR GOAL. SO I THINK WE NEED TO HAVE SOME ADVICE ON HOW ONCE A WHITE PAPER IS CREATED, HOW IT'S GOING TO THEN BE DISSEMINATED TO THE PHYSICIAN COMMUNITY THROUGHOUT -- >> RIGHT, I WOULD THINK THAT THAT'S PROBABLY MAYBE FOR ANOTHER SLIDE, SO THIS IS JUST TOPICS THAT WILL BE COVERED. ARE THERE ANY OTHER TOPICS THAT -- ROBYN, DID YOU HAVE SOMETHING? OKAY. >> CAN I MAKE A QUICK FOLLOW-UP ON THE SAFETY ISSUE? >> SURE. >> I WANTED TO NOTE THAT ALSO IF WE HAVE CERTAIN TOPICS THAT WE'RE TALKING ABOUT IN BOTH HEALTH AND WELLNESS AND THE SAFETY WORKING GROUP, IF WE MAKE THE CALL TO INCLUDE THEM IN BOTH, THEN WE WOULD NEED TO MAKE SURE THAT THEY'RE COORDINATING SO THAT WE DON'T HAVE TWO WORKING GROUPS SAYING ONE THING ABOUT THE SAME ISSUE AND ANOTHER THING IN THE OTHER WORKING GROUP AND GOING AT CROSS PURPOSES. >> SURE, THE SAFETY WORKING GROUP IS THE LAST ONE THAT WE'LL BE CONVENING BECAUSE WE PUT THEM IN ORDER LAST TIME, SO THIS WORKING GROUP MAY BE FINISHED WITH THIS WORK BY THEN, SO WE'LL KNOW WHAT THE OUTCOMES ARE HOPEFULLY. AND TRY NOT TO DUPLICATE EFFORT. OR TO AT LEAST BUILD ON WHAT'S BEEN SPOKEN ABOUT IN THIS ONE. JOHN? >> I JUST HAD SOMEONE MESSAGE ME ONLINE. SHOULD WE HAVE DEATH FROM DROWNING SPECIFICALLY UP THERE? DROWNING HAS BEEN MENTIONED AS A MAJOR MORTALITY RISK BEFORE AND IT'S NOT HERE. >> SURE. SO PREMATURE MORTALITY, AS YOU CAN SEE, THERE'S AN "ET CETERA. "THERE CAN BE MANY OTHER THINGS. WE JUST WANTED TO GIVE A FEW EXAMPLES, BUT DROWNING,& ACCIDENTS, MANY OF THOSE OTHER THINGS WOULD COUNT IN TERMS OF -- >> AND WE SHOULD SAY REPRODUCTIVE HEMENT HEALTH TOO. >> I KNOW IT'S AN ET CETERA BUT ALSO UNDER THE PREMATURE MORTALITY RATE, REALLY LOOKING AT THE IMPACT OF LONG TERM MEDICATION USE WITH INDIVIDUALS. >> DEFINITELY. >> THAT TOIP IK WAS TOPIC WAS COVERED IN T HE AUTISTICA CONFERENCE AS WELL. >> I ALSO WANT TO TALK ABOUT MEDICAL DECISION-MAKING. WHICH ISN'T DIRECTLY A HEALTH FACTOR BUT IT'S DEFINITELY SOMETHING THAT CAN INFLUENCE OUTCOMES. >> THIS CAN BE BOTH MEDICAL RELATED AS WELL AS SERVICE RELATED. KEVIN? >> ANOTHER ONLINE SUBMISSION. REPRODUCTIVE HEALTHCARE AND MATERNAL CARE FOR AUTISTIC WOMEN. >> ANYTHING'S ELSE FROM IACC MEMBERS HERE? OH OKAY. OKAY. SO LET'S MOVE TO ACTIVITIES. SO THE ACTIVITIES THAT WE HAVE PLANNED FOR THE MOMENT ARE PHONE MEETINGS TO DISCUSS ISSUES. WE'RE PLANNING TO -- I SENT OUT A CALL TO IACC MEMBERS AGAIN TO HELP US IDENTIFY ADDITIONAL EXTERNAL EXPERTS WHO CAN SERVE ON THIS WORKING GROUP, AND ONCE I GET THOSE NAMES BY NEXT WEEK, WE WILL NARROW THOSE DOWN TO THE PEOPLE THAT CAN SERVE ON THIS WORKING GROUP AND WE'LL TRY TO SCHEDULE -- WE'LL INVITE THEM TO JOIN US AND THEN SCHEDULE A MEETING FOR FEBRUARY. WE CAN HAVE OUR FIRST MEETING. THE LAST TIME WE MET, WE TALKED ABOUT A WRITTEN DOCUMENT BEING ONE OF THE PRODUCTS OF THIS GROUP. EITHER A WHITE PAPER, SOME KIND OF REPORT OR PUBLISHED ARTICLE THAT OUTLINES CHALLENGES AND RECOMMENDATIONS FOR HEALTH AND WELLNESS ISSUES AND/OR RECOMMENDATIONS FOR THE PROVIDER COMMUNITY. AND SO THAT CAN DEVELOP AS WE HAVE THESE DISCUSSIONS. AND THE SAME DOCUMENT CAN BE USED WITH A BASIS OF THE STRATEGIC PLAN UPDATE THAT WILL BE REQUIRED IN THE NEXT YEAR SO WE CAN GET ADDITIONAL USE OUT OF THE WORK OF THIS WORKING GROUP. THERE ALSO WOULD BE AN OPPORTUNITY AS OUR OFFICE PLANS THESE IACC MEETINGS AT THE UPCOMING APRIL 2018 IACC MEETING IF THE COMMITTEE AND THE WORKING GROUP WISHES TO, WE COULD SET ASIDE TIME TO HAVE A PANEL DISCUSSION THAT WOULD COVER SOME OF THESE ISSUES. AS YOU SAW, THE LIST IS FAIRLY LONG, BUT IF THERE WERE SOME ISSUES THAT ARE HIGH PRIORITY THAT YOU WOULD LIKE TO DISCUSS AT THAT MEETING, WE COULD HAVE THE WORKING GROUP HELP US PUT TOGETHER A DISCUSSION TO HAPPEN AT THAT MEETING. THE INPUT FROM EXPERTS THAT MIGHT BE INVITED TO PARTICIPATE IN THAT COULD HELP US GATHER INFORMATION THAT WOULD HELP CONTRIBUTE TO OUR WRITTEN DOCUMENT, SO ANY COMMENTS ABOUT THAT? DAVID? >> I THINK HAVING A PANEL IS ACTUALLY A REALLY GOOD IDEA. I THINK, THOUGH, GIVEN THE LONG LIST OF TOPICS, IT MIGHT TAKE THE COMMITTEE A COUPLE OF MEETINGS JUST TO PRIORITIZE WHAT WOULD GO ON THE PANEL. AND I WORRY THAT APRIL IS PRETTY QUICK TO TRY AND GET THAT DONE SO I WONDER WHETHER WE COULDN'T HAVE THE COMMITTEE MEET, COME UP WITH PRIORITIES, THEN DO THE INVITATION FOR THE JULY MEETING? >> YES, THAT WOULD BE A POSSIBILITY. ALISON? >> I WOULD SAY THAT THESE ISSUES ARE OF SUCH GREAT IMPORTANCE IN THE COMMUNITY THAT WE SHOULD CONSIDER DOING A PANEL IN APRIL AND ANOTHER ONE IN JULY, SO THAT WE WOULD BE ABLE TO REALLY HONE IN ON MORE THAN ONE ISSUE. SO I WOULD NOT WANT TO WAIT. >> GREAT. THANK YOU. LARRY? >> THANK YOU. CAN WE TURN BACK TO THE WRITTEN DOCUMENT, CAN THAT BE DISCUSSED AT THIS POINT? >> YES, WE CAN TALK ABOUT THE WRITTEN DOCUMENT. >> WITHOUT DENIGRATING THE USE OF -- OR USEFULNESS OF A WHITE PAPER REPORT OR PUBLISHED ARTICLE, I WOULD REALLY HOPE THAT WE WOULD ALSO CONSIDER A SERIES OF INFOGRAPHICS TO GO OUT TO THE COMMUNITY THAT ARE ACTUALLY -- I WROTE AN EMAIL THIS MORNING AND N. RESPONSE TO SOMETHING THAT ONE OF OUR RESEARCHERS PRODUCED AND THE QUESTION I ASKED, IS THERE ANY THANK YOU MAN IN THE WORLD THANK HUMAN IN THE WORLD THAT WILL UNDERSTAND HOW THESE DATA ARE REPRESENTED. I THINK IT'S REALLY CRITICAL FOR US, PRODUCING ANYTHING THAT'S NOT USED, NOT READ, IS USELESS. AND I THINK IN DEVELOPING -- THINKING ABOUT THE FINAL PRODUCTS AS THE GROUP IS DELIBERATING, I THINK IS AN IMPORTANT APPROACH THAT WE NEED TO CONSIDER AND NOT JUST FOR THIS GROUP, FOR ALL OF THE DIFFERENT GROUPS. THANK YOU. >> THIS CERTAINLY IS A SUGGESTION WE CAN TAKE UP. WE KNOW, FOR EXAMPLE, LIFE COURSE OUTCOMES PROGRAM AT DREXEL HAS BEEN REALLY GOOD WITH DOING INFO GRAPHICS WITH THEIR INFORMATION. THERE ARE SOME OTHER AGENCIES THAT ALSO HAVE GOTTEN RID OF SOME OF THEIR LENGTHY REPORTS AND REPLACED THEM WITH SLIDE PRESENTATIONS WITH INFO GRAPHICS, AT NIH, WE HAVE AN EXCELLENT MEDICAL ARTS PROGRAM THAT CAN HELP US WITH DESIGNING THINGS IF WE HAVE CONCEPTS, SO ONCE WE HAVE CONTENT, CERTAINLY THE PRESENTATION IS SOMETHING THAT WE CAN WORK ON AND PROVIDE SOMETHING NICE, SO THANKS FOR THE SUGGESTION. OTHER COMMENTS? JOHN? >> WITH RESPECT TO IMPROVING HEALTH OUTCOMES, IT SEEMS LIKE ALL OF OUR STUDIES ARE FOCUSED ON EVALUATING AND REMEDIATING DEFICITS. WOULD YOU SEE IT AS WITHIN THE SCOPE OF NIH'S RESPONSIBILITY TO FUND STUDIES TO IDENTIFY STRENGTHS IN A POPULATION SUCH THAT THAT COULD BE CAPITALIZED UPON BY EMPLOYERS AS A WAY OF NIH SUPPORTING POSITIVE INTERVENTION GROWING FOR AUTISTIC PEOPLE? >> CERTAINLY WITHIN THE PURVIEW OF NIH, SURE. >> COULD WE SOMEHOW ASK THAT QUESTION, THEN? CAN THAT BECOME AN ACTION THAT WE AT IACC ASK FOR? WE HAVE INITIATIVES STARTING AROUND THE COUNTRY LIKE AUTISM AT WORK, FOR EXAMPLE. TODAY, WE HAVE TWO PEOPLE SITTING HERE FROM NORTH RUP GRU MON, A LEADING DEFENSE CONTRACTOR, AND THEY'RE HERE BECAUSE THEY BELIEVE THAT THERE'S AN ADVANTAGE TO THEIR COMPANY EMPLOYING AUTISTIC PEOPLE. SO THAT'S VERY DIFFERENT FROM DISABILITY ACCOMMODATION, AND WE DON'T DO ANYTHING IN GOVERNMENT TO SUPPORT THAT, AND YET THAT COULD BE TREMENDOUSLY BENEFICIAL TO OUR POPULATION. >> JOHN, JUST TO FOLLOW UP ON THAT, SO FOR THE APRIL MEETING, WE ARE PLANNING A PANEL ON EMPLOYMENT AND SO I WOULD LOVE TO MEET WITH THE FOLKS FROM NORTHRUP GRU MONDAY TO TALK WITH THEM AS WELL, WE'RE GOING TO BE DISCUSSING THAT ISSUE AND IT'S VERY RELEVANT. >> SUSAN, WE SHOULD INVITE SOME PEOPLE FROM THE AUTISM AT WORK INITIATIVE. THEY'RE PART OF IT, MICROSOFT -- >> I HAVE ALREADY, BUT YES -- >> EXCELLENT. TWO OF THEM ARE HERE NOW, THEY CAME EARLY SPHWHR. I >> I HAVEN'T SPOKEN WITH THEM, I WOULD LOVE TO TALK TO THEM. >> I WAS REALLY HAPPY THAT SUSAN FOLLOWED UP ON THIS, BECAUSE A COUPLE OF MONTHS AGO, I HEARD A VERY INSPIRATIONAL PRESENTATION BY FOLKS AT SAP, ANOTHER BIG IP COMPANY, AND THEY MADE EXACTLY YOUR POINT. THEY WERE TRYING -- THEY DEVELOPED A WHOLE PROGRAM TO EMPLOY PEOPLE ON THE AUTISM SPECTRUM. NOT BECAUSE IT WAS OUT OF ANY KIND OF SORT OF COMMUNITY SPIRIT, BUT BECAUSE THEY THOUGHT THAT THEY WERE GOING TO GET BENEFICIAL EMPLOYEES, AND ONE OF THE THINGS THAT THEY HIGHLIGHTED WAS THAT A PERSON ON THE AUTISM SPECTRUM, ONCE THEY ARE INCORPORATED INTO A COMPANY AND FEEL COMFORTABLE, THERE'S STABILITY THERE. WE MET SOME OF THE EMPLOYEES WHO SAID THEY'LL STAY THERE FOR 30 YEARS, WHEREAS TURNOVER SEEMS TO BE THE BIGGEST PROBLEM IN HIGH-TECH COMPANIES. SO I DO THINK WE'LL ALL FEEL VERY INSPIRED BY THE PRESENTATIONS THAT SUSAN IS GOING TO HAVE COMING IN APRIL. I THINK THAT THIS IS A DIFFERENT TOPIC, THEN -- AN IMPORTANT TOPIC BUT A DIFFERENT TOPIC THAN THE HEALTH OUTCOMES WORKFORCE, AND I WOULD HATE US TO GET SO DIFFUSE IN TERMS OF WHAT WE'RE COVERING IN THE WORK GROUP THAT WE'RE TALKING ABOUT, THAT WE DON'T ACCOMPLISH THE KIND OF WHITE PAPER AND INFORMATION TRANSFER THAT WE'RE HOPING TO DO, BUT NOT TO BELITTLE THE POINT THAT YOU'RE MAKING, JOHN, I THINK IT'S INCREDIBLY IMPORTANT, AND I WOULD ENCOURAGE THE COMMITTEE TO TAKE IT ON SERIOUSLY IN FUTURE MEETINGS. >> I JUST THINK MORE EMPLOYED AUTISTIC PEOPLE EQUALS BETTER HEALTH OUTCOMES AND THAT'S JUST A POINT THAT SHOULD BE THERE. >> YES, AND SO WE WILL BE TALKING ABOUT THAT IN APRIL AND OUR COLLEAGUES AT DEPARTMENT OF LABOR ARE VERY EXCITED TO BE A PART OF THAT AS WELL. OTHER COMMENTS? >> SO SUSAN, I'LL JUST ENCOURAGE THE FELLOW MEMBERS OF IACC TO GET INVOLVED IN THIS GROUP. PEOPLE MADE REALLY GOOD COMMENTS, AND I HOPE -- HOPEFULLY IT WON'T BE TOO BURDENSOME, BUT WE NEED TO HAVE EVERYBODY'S EXPERTISE PARTICIPATING, SO I HOPE -- LET SUSAN KNOW THAT YOU WANT TO PARTICIPATE AS MUCH AS POSSIBLE ON THIS WORK GROUP, AND I KNOW THAT JULIE AND I ARE REALLY EXCITED TO GET EVERYBODY'S ADVICE AND TRY AND ROLL IT INTO SOMETHING THAT WILL BE ACTIONABLE AS WELL. >> WOULD YOU FIND IT HELPFUL FOR ME TO SEND INFORMATION ABOUT THE WORK GROUP TO THE ENTIRE COMMITTEE, WHETHER OR NOT YOU'VE SIGNED UP FOR IT, OR WOULD YOU PREFER FOR ME TO JUST FOCUS ON SPECIFIC PEOPLE THAT HAVE SIGNED UP? I'M THINKING IF I SEND IT OUT TO THE ENTIRE GROUP, IF SOME OF YOU CAN JUMP IN FOR CERTAIN MEETINGS, YOU'LL BE ABLE TO DO THAT AND IF YOU WANT TO IGNORE THE EMAIL, YOU CAN IGNORE IT TOO. >> I'D LIKE TO SEE IT SENT TO EVERYONE. >> OKAY. SO I'LL SEND IT TO EVERYONE SO THAT YOU ALL HAVE A CHANCE AND IF YOU CAN'T MAKE CERTAIN MEETINGS, THAT'S FINE, BUT WE HOPE TO GET AS MUCH PARTICIPATION AS WE CAN. AND UNLIKE A SUBCOMMITTEE, THE WORKING GROUP DOESN'T HAVE A LIMITATION ON THE NUMBER OF PEOPLE THAT CAN BE A PART OF IT. SO ON MY NEXT SLIDE, WE JUST TALKED ABOUT TOPIC SUGGESTIONS. SO NEXT WEDNESDAY IS THE DEADLINE I'VE SET TO GET ADDITIONAL NOMINATIONS FOR WORKING GROUP MEMBERS, AND THEN WE WILL NARROW THAT DOWN AND GET SOME PEOPLE INVITED TO JOIN US AND WE WILL BE LOOKING FOR A DATE, SO BE LOOKING FOR A DOODLE POLL THAT WILL BE COMING YOUR WAY TO TRY TO GET A DATE IN FEBRUARY FOR OUR FIRST CALL, AND IF NEEDED, WE CAN HAVE ANOTHER CALL IN MARCH, BFER THE APRIL BEFORE THE A PRIL MEETING. WE CAN TRY TO HAVE SOME KIND OF A PANEL IN APRIL THAT WILL DISCUSS PART OF THIS HEALTH AND WELLNESS ISSUE WHICH IS QUITE BROAD, SO A NUMBER OF DISCUSSIONS LIKELY WILL BE NEEDED TO HELP YOU WITH YOUR WORK. AND SO THAT'S WHAT I HAVE FOR THE WORKING GROUP. IS THERE ANY OTHER QUESTION OUT THERE REGARDING THE WORKING GROUP BEFORE WE MOVE ON? JOHN? >> I HAD ANOTHER ISSUE THAT WAS JUST MESSAGED TO ME AND THAT IS THAT WE ADD MATERNAL REPRODUCTIVE HEALTHCARE NEEDS. CERTAINLY THAT HAS A BIG EFFECT. >> YES, AND I HAVE THAT ON MY LIST FROM THE DISCUSSION EARLIER EARLIER. >> I ACTUALLY THINK THAT DOING THAT WOULD REALLY COMPLETE THE LIFESPAN, BECAUSE AS YOU KNOW, WE ALWAYS SAY AGING BEGINS IN THE WOMB, SO SOME OF THESE LATER ISSUES REALLY HAVE THEIR ONSET PRENATALLY, AND THAT COULD TIE IN SOME OF THESE FOLATE DISCUSSIONS AS WELL. >> I THINK WE WERE ALSO THINKING OF AUTISTIC MOTHERS. SO THE MOTHERS OF AUTISTIC PEOPLE, AND REPRODUCTIVE HEALTH OF PEOPLE. >> YES, AND NICHD HAS A SPECIAL INTEREST IN REA PRODUCTIVE HEALTH FOR WOMEN WITH DISABILITIES, BOTH PHYSICAL AND INTELLECTUAL DISABILITIES. >> AND DIANA, IF YOUR INSTITUTE HAS ANY SPECIFIC EVENTS COMING UP RELATED TO THAT, PLEASE LET US KNOW SO WE CAN GET THAT INFORMATION OUT TO THE IACC. >> ALL RIGHT. SO THEN MOVING ON FROM THIS, I WANTED TO LET YOU KNOW WE ARE TAKING SUGGESTIONS FOR TOPICS FOR FUTURE IACC MEETINGS. WE MAY HAVE SEVERAL RELATED TO THIS WORKING GROUP, BUT WE ALWAYS KEEP A BANK OF IDEAS FROM THE COMMITTEE AS WE LOOK FOR SPEAKERS AND TOPICS TO COVER SO IF YOU HAVE ANY SUGGESTIONS, FEEL FREE TO JUST EMAIL THEM TO ME AT ANY TIME AS I KNOW MANY OF YOU DO. AND WE WILL KEEP THAT LIST RUNNING AND USE IT TO HELP PLAN FUTURE MEETINGS. THERE'S SUPPOSED TO BE ANOTHER SLIDE HERE THAT IS MISSING, SO WE HAVE JUST CHANGED THE IACC MEETING FOR APRIL TO APRIL 19TH. WE CAME UP WITH A CONFLICT WITH THE APRIL 18TH DATE THAT WAS SET BEFORE THAT SO WE'VE MOVED IT TO THE 19TH, WHICH IS A THURSDAY, AND WE HOPE THAT YOU ALL WILL BE ABLE TO MAKE IT OR MOST OF YOU, SO I JUST WANTED TO MENTION THAT HERE AND I DID HAVE A SLIDE BUT PUT THAT ON YOUR CALENDARS AND OF COURSE YOU WILL GET MORE INFORMATION ABOUT THAT COMING UP. SO NEXT IS LUNCH, AND THERE IS LUNCH -- OH, GO AHEAD. >> SORRY. >> WE HAVE A CROWD SOURCED SITE CALLED PREG SOURCE, WHICH IS AN OPPORTUNITY FOR WOMEN TO SHARE AND RECORD THEIR PREGNACY EXPERIENCES, AND WE'RE VERY INTERESTED IN HEARING FROM WOMEN WHO ARE ON THE SPECTRUM, WHO ARE PREGNANT ABOUT THEIR EXPERIENCES WITH PREGNANCY, SO WE CAN SEND THE LINK OUT TO EVERYBODY. >> PLEASE DO, AND WE'LL PUT IT ON THE IACC WEBSITE AS WELL. RELATED TO THAT, YOU ALL RECEIVED OUR OARC NEWSLETTER BEFORE THIS MEETING AND WE ADDED A NEW SECTION ON COMMUNITY PARTICIPATION OPPORTUNITIES. SO WE WILL ADD THAT TO THE NEXT NEWSLETTER AS WELL, BUT WE TRIED TO HIGHLIGHT SOME DIFFERENT COMMUNITY PARTICIPATION ACTIVITIES SUCH AS THE AUTISM SCIENCE FOUNDATIONS, AUTISM SISTERS PROJECT AND SOME OTHER ACTIVITIES, SO IF ANYONE AROUND THE TABLE HERE HAS AN ACTIVITY, YOU WANT THE COMMUNITY TO PARTICIPATE IN AND YOU WANT IT HIGHLIGHTED, PLEASE LET ME KNOW BECAUSE WE CAN PUT IT ON THE IACC WEBSITE AND INCLUDE IT IN AN UPCOMING NEWSLETTER. SO NOW LUNCH. >> I WANT TO GET GOING ON THE PUBLIC COMMENT SESSION OF TODAY'S MEETING OF THE IACC. SO TODAY WE HAVE THREE ORAL PUBLIC COMMENTS THAT HAVE BEEN SUBMITTED. WE WILL BE HEARING FROM DR. LEE FROM KENNEDY KREIGER. FROM Mrs. CLARK AND SHERRY CHASE HAS ALSO SIGNED UP TO GIVE PUBLIC COMMENT ABOUT HADN'T ARRIVED YET SO WE WILL HOPEFULLY HEAR FROM HER AS WELL. SO, AS WE LISTEN, WE CAN TAKE NOTE OF ANY QUESTIONS THAT WE HAVE AND THEN WE WILL HAVE AN OPPORTUNITY TO HAVE QUESTIONS AND COMMENTS AFTER EACH OF THESE PUBLIC COMMENTS. SO, I'D LIKE TO CALL LEE UP TO SPEAK. IF YOU LIKE TO GO TO THE PODIUM. >> SO THIS IS WIERD, I'MITUDES TO DOING PRESENTATIONS WITH A POWERPOINT RATHER THAN WITH A PAPER SO BEAR WITH ME. MY NAME IS LEE. I'M A CHILD PSYCHIATRIST IN BALTIMORE, MARYLAND AT KENNEDY COLLEAGUER AND I RUN AN INPATIENT UNIT SERVING INDIVIDUALS, CHILDREN, ADOLESCENTS AND YOUNG ADULTS WITH AUTISM AND INTELLECTUAL DISABILITY WHO ARE ADMITTED TO OUR INPATIENT UNIT FOR VERY SEVERE CHALLENGING BEHAVIORS, USUALLY BEHAVIORS INCLUDING SELF INJURY, AND AGGRESSION THAT HAVE REACHED LIFE-THREATENING AND CERTAINLY LIFE LIMITING LEVELS. I HAVE BEEN IN THIS POSITION FOR NEARLY 15 YEARS AND I WOULD LIKE TO SPEAK ON BEHALF OF MY PATIENTS AND ON BEHALF OF THEIR FAMILIES. MANY OF WHOM HAVE REMAINED UNDER OUR CARE AT KENNEDY KREIGER DURING THE TRANSITION FROM CHILDHOOD TO ADULTHOOD. THE VAST MAJORITY OF OUR PATIENTS ARE SIGNIFICANTLY AFFLICTED AND CHARACTERIZED AS HAVING AUTISM REQUIRING EXTENSIVE SUPPORTS AND WITH INTELLECTUAL DISABILITY. THEY DON'T COME TO KENNEDY KREIGER FOR AUTISM OR INTELLECTUAL DISABILITY, HOWEVER, BUT RATHER FOR SEVERE SELF INNAGES, AGGRESSIVE AND DISRUPTIVE BEARS THEY DISPLAY. AND CAN RUN THE GAMUT FROM ANXIETY, MOOD AND PSYCHOTIC DISORDERS AND MORE. THESE KIDS ARE REALLY SUFFERING AND SO ARE THEIR FAMILIES. THEIR PARENTS WILL MOVE HEAVEN AND EARTH FOR THEIR CHILDREN AND ONE OF THE HARDEST PART OF THE JOB IS TELLING THE MOMS AND DADS ON OUR WAIT LIST THAT I DON'T HAVE A BED TODAY FOR THEIR BLOODY AND BATTERED AND BRUISED CHILD AND HOPEFULLY WILL HAVE A BED SOMETIME SOON. NONE OF THE PARENTS THAT WE WORK WITH ARE GLAD THAT THEIR CHILD HAS AUTISM OR SEE THEIR SON OR DAUGHTER'S AUTISM AND ASSOCIATED SUFFERING AS PART OF NEURODIVERSITY. IN FACT, MOST OF THE PARENTS WOULD SELL THEIR SOLD FOR THEIR CHILD NOT TO HAVE AUTISM. AS ONE PARENT WHEN SPENT 30 YEARS TRYING TO GET THE BEST SERVICES FOR HER SON TOLD ME, I WOULD WALK THROUGH FLAMES FOR MY SON BUT I DON'T BUY INTO THE AUTISM FAIRYTALE. THESE AREN'T MY WORDS. BUT THOSE OF A PARENT WHOSE WALKED THE AUTISM WALK FOR THREE DECADES. AND I HEAR MANY SUCH COMMENTS. I KNOW VERY FAR WELL THAT THIS TYPE OF RESPONSE AND THE MERE EXISTENCE OF THE TYPES OF SEVERELY AFFLICTED AUTISTIC KIDS IN OUR CARE FLIES IN THE FACE OF THE OVERRIDING CURRENT AGENDA FOR AUTISM WHERE EVERYTHING IS VERY HAPPY, AND DIVERSE AND SOMEWHAT EVEN SUGGESTING THE REMOVAL OF AUTISM AS A PSYCHIATRIC ILLNESS. I WOULD SUGGEST THAT THE DSM5 CHARACTERIZATION OF AUTISM DOES NOT ACCURATELY DESCRIBE THE CONDITION AND THERE ARE LIKELY MANY CONDITIONS CURRENTLY THROWN TOGETHER INTO THE AUTISM RUBRIC, WHICH ONLY HINDERS SCIENCE AND OUR ABILITY TO MAKE IMPORTANT ADVANCES TO HELP EVERYONE ALONG THIS RANGE OF DIAGNOSIS. BUT I'M A LOT LESS FOR SPLITTING MAKING SURE THAT THOSE WHO DON'T CURRENTLY FALL INTO THE HAPPY AND HOPEFUL SIDE OF THE DIAGNOSIS AT LEAST NOT HAPPY AND HOPEFUL TODAY, BUT WITH THE POTENTIAL FOR SO MUCH IMPROVEMENT AND REALLY REACHING POTENTIAL IS ONE OF THE MAIN MOTTOS OR GOALS OF KENNEDY KREIGER, THAT THESE PEOPLE STILL HAVE A VOICE AND DON'T BECOME THE BLACK SHEEP OF THE AUTISM COMMUNITY JUST BECAUSE THEY AREN'T BLOGGING OR RECITING AT LINCOLN CENTER. BECAUSE THESE AUTISTIC KIDS WITH SEVERE BEHAVIORAL, PSYCHIATRIC AND MEDICAL CONCERNS AS WELL AS SIGNIFICANT COGNITIVE DISABILITY, REALLY DO EXIST AND SO DO THEIR FAMILIES WHO ARE LESS THAN ENAMORED WITH AUTISM AND FRANKLY HEARTBROKEN AND EXHAUSTED. THESE KIDS NEED OUR UNDERSTANDING AND HELP JUST AS MUCH AS THE AUTISTIC CHILD CONTEMPLATING BEST STRATEGIES TO SUCCEED AT COLLEGE. AND THESE WILL CONTINUE TO NEED HE SUPPORT OF THE AUTISM COMMUNITY AS THEY BECOME ADULTS, AS THEY WILL NOT BE ABLE TO LIVE INDEPENDENTLY, WILL REQUIRE EXTENSIVE SUPPORTS AND SUBSTITUTED DECISION-MAKING AND PUSHED INTO MODELS THAT JUST DON'T MEET THEIR UNIQUE NEEDS. I ENCOURAGE THE IACC AND AUTISM COMMUNITY IN GENERAL, TO CONSIDER SEVERAL THINGS. FIRST, THE IACC NEEDS TO PRIORITIZE RESEARCH ON THE TREATMENT OF SEVERE SELF AGGRESSIVE BEHAVIORS. THESE BEHAVIORS ARE HIGHLY PREVALENT AND IT'S ESTIMATED IN STUDIES THAT ABOUT A THIRD OF INDIVIDUALS WITH AUTISM WILL ENGAGE IN SELF INJURIOUS BEHAVIOR AND OVER HALF IN AGGRESSIVE BEHAVIORS, YET VERY LITTLE ATTENTION IS PAID TO THIS DEVASTATING PROBLEM. THE IACC SHOULD HOST A PANEL FOCUSED ON THESE DANGEROUS BEHAVIORS. NOT ONLY ARE THEY DANGEROUS TO THE CHILDREN AND FAMILIES INVOLVED, BUT THEY OFTEN PRECLUDE PARTICIPATION IN INCLUSIVE COMMUNITY-BASED EDUCATIONAL AND VOCATIONAL PROGRAMS. THESE BEHAVIORS ARE OFTEN PHYSIOLOGICAL IN ETIOLOGY, TYPICALLY FROM A CO-MORBID PSYCHIATRIC DISORDER AND DON'T REPRESENT COMMUNICATION FROM NON VERBAL INDIVIDUALS. IT IS OFTEN A MEDICAL PROBLEM THAT REQUIRES MEDICAL SOLUTIONS. SECONDLY THE IACC SHOULD PROMOTE A CHOICE-BASED APPROACH TO SERVICE PROVISION THAT INSURES THAT ADULTS WITH THESE BEHAVIORS HAVE A PLACE TO GO WHEN THEIR FAMILIES CAN NO LONGER SAFELY TAKE CARE OF THEM. SOME AUTISTIC ADULTS HAVE SEVERE BEHAVIORS THAT CAN'T BE MANAGED IN COMMUNITY SETTINGS. THEY MAY NOT EXHIBIT THEM ALL THE TIME, BUT THEY NEED TO BE SOMEWHERE WITH EXPERIENCED CAREGIVERS WHO CAN MANAGE DANGEROUS BEHAVIORS WHEN THEY DO OCCUR, WITH ACCESS TO PROFESSIONALS WHO CAN TREAT THEM, AS WELL AS STRUCTURED PROGRAMS TO MAXIMIZE COMMUNITY ACCESS AS WELL AS PROVIDING MEANINGFUL AND SATISFYING SITE-BASED PROGRAMMING. THIS POPULATION NEEDS TO BE SURROUNDED WITH WELL-TRAINED AND WELL-PAID AIDS BECAUSE HEALTH AND HAPPINESS OF THESE ADULTS DEPENDS ON THE EXCLUSIVE LIE ON THAT ONE VARIABLE. THE IACC SHOULD WRITE A WHITE PAPER FOCUSED ON THE SERVICE NEEDS OF THIS POPULATION. AND FINALLY, WE NEED TO INVITE MORE PARENTS OF SERIOUSLY AFFECTED AUTISTIC CHILDREN TO HAVE SEATS ON THE IACC. THESE PARENTS REPRESENT CHILDREN WHO CAN'T REPRESENT THEMSELVES. AND THEY REQUIRE A VOICE. THANK YOU VERY MUCH FOR YOUR ATTENTION. [ APPLAUSE ] >> THANK YOU, DOCTOR. IS DOES ANYONE ON THE COMMUNITY HAVE ANY COMMENTS OR QUESTIONS YOU'D LIKE TO ASK? SAMANTHA? >> SAMANTHA: I WANT TO CORRECT A MISCONCEPTION THAT I THINK PEOPLE MIGHT THINK FROM HEARING THIS COMMENT THAT THE PEOPLE THAT ARE REPRESENTED BY THE NEURODIVERSITY COMMUNITY ARE NOT KENNEDY KREIGER'S CLIENTS. WE HAVE MEMBERS OF OUR COMMUNITY WHO ABSOLUTELY HAVE BEEN CLIENTS AT KENNEDY KREIGER. ON OUR ONE OF THE DAY, WE ARE VERY SERIOUSLY AFFECTED. WE HAVE SELF INJURIOUS BEHAVIORS. WE ARE SUICIDAL. WE HAVE SIGNIFICANT DIFFICULTY REGULATING OUR EMOTIONS AND MANY PEOPLE IN OUR COMMUNITY HAVE SPECIFICALLY BEEN CLIENTS OF KENNEDY KREIGER'S. SO I WANTED TO NOTE THAT. >> THANK YOU. ALISON? >> ALISON: SO, THANK YOU SAMANTHA FOR BRINGING THAT UP. I THINK THAT'S AN IMPORTANT POINT. I ALSO THINK THAT DR. WATELL IDENTIFIED A VERY HIGH PRIORITY, HEALTH AND WELLNESS AREA OF FOCUS. AND I WOULD LOVE TO SEE US IMPLEMENT HER SUGGESTION AND HOLD THIS PANEL AT THE APRIL MEETING. I KNOW DAVID YOU WERE SAYING YOU MAY NOT HAVE A TOPIC BUT THIS WOULD BE A GREAT TOPIC THAT SHE BROUGHT BEFORE US. I THINK IT ALSO WOULD BE A GOOD COMPLIMENT TO THE EMPLOYMENT PANEL PLANNED IF THE APRIL MEETING BECAUSE IT WOULD REALLY SPEAK TO THE BREATHS OF THE SPECTRUM. >> THANK YOU. DID I SEE DAVID MAN DELL? >> DAVID: YES, I THINK SAMANTHA'S POINT -- I THINK GOES VERY WELL WITH DR. WATELL'S POINT. THESE SELF INJURY AND AGGRESSION PERHAPS VARYING BY INDIVIDUAL, ARE NOT ISOLATED TO ONE PART OF THE SPECTRUM. AND I THINK REALLY HIGHLIGHT THE NEED FOR THIS COMMITTEE TO ADDRESS IT HAD ON. I WOULD ALSO POINT TO THE NEED FOR A BETTER UNDERSTANDING OF MORE SERIOUSLY IMPAIRED INDIVIDUALS WITH AUTISM AND THE ISSUE OF A LACK OF SAFE PLACE -- FIRST THE LACK OF COMMUNITY SERVICES AND THE FAILURE OF THOSE COMMUNITY SERVICES THAT OFTEN LEAD TO THE NEED FOR PLACEMENTS IN PATIENT SETTINGS IS ONE CRITICAL ISSUE. THE SECONDS IS, WHEN THOSE SERVICES ARE NEEDED, THERE ARE SO FEW PLACES IN THIS COUNTRY WHERE THEY ARE AVAILABLE. REGARDLESS OF WHERE YOU LIE ON THE SPECTRUM. AND I THINK IT IS ALSO CRITICALLY IMPORTANT -- WE OFTEN THINK ABOUT -- WE THINK ABOUT EVIDENCE-BASED CARE WITHIN THE CONTEXT OF COMMUNITY CARE AND WE NEED TO BE THINKING ABOUT EVIDENCE-BASED CARE WITHIN THE CONTEXT OF MORE RESTRICTED AND SEGREGATED SETTINGS AS WELL. AND WHAT THE STANDARDS SHOULD BE AND HOW WE DO RESEARCH. AND I REALLY AM VERY EXCITED BY THE NETWORK OF INPATIENT SETTINGS THAT HAS BEEN DEVELOPED TO BEGIN TO STUDY THESE ISSUES AND WE OUGHT TO BE THINKING ABOUT HOW TO LEVERAGE THAT MORE AND EXPAND THIS CAPACITY. >> SAMANTHA: I WANT TO FLLOW-UP BECAUSE SOMETIMES IT'S HARD FOR ME TO GET EVERYTHING OUT AT THE SAME TIME. I HAVE NOTED THIS IN PREFERS MEETINGS. IN THE SELF ADVOCACY, WE SAY YOU'RE SEEN AS A PERSON BUT NOT DISABLED. IF YOU'RE LOW FUNCTIONING YOU'RE SEEN AS DISABLED BUT NOT A PERSON. AND MANY OF US HAVE BEEN SEEN AS BOTH AT DIFFERENT TIMES IN OUR LIVES. SOMETIMES JUST DIFFERENT DAYS, DIFFERENT HOURS WITHIN THE SAME DAY, WE ARE SEEN AS BOTH. AND THE SUGGESTION THAT ANYONE WHO IS A SELF-ADVOCATE MUST BE PROMOTING A VISION OF AUTISM THAT IS UNICORNS AND RAINBOWS ALL THE TIME, WE NEVER HAVE A SINGLE PROBLEM, BUT IF YOU DO HAVE PROBLEMS THEN OBVIOUSLY YOU CAN'T SELF ADVOCATE. THAT IS JUST -- WE REALLY NEED TO MOVE PAST THAT. AND WE NEED TO START LISTENING TO EACH OTHER AND RECOGNIZING THAT NO ONE WHO IS A SELF-ADVOCATE -- IF SOMEONE IS A SELF-ADVOCATE ON THE AUTISM SPECTRUM, THEY DON'T THINK THEY ARE DISABLED, THEY ARE NOT GOING TO BE HERE. RIGHT? IF I DIDN'T HAVE ANY ISSUES RELATED TO BEING AUTISTIC, I WOULDN'T DEVOTE MY ENTIRE LIFE TALKING ABOUT AUTISM ADVOCACY, BECAUSE I WOULDN'T NEED TO. WE ALL HAVE ISSUES, MANY OF OUR MEMBERS HAVE BEEN HOSPITALIZED. OFTEN MANY TIMES. AND WE HAVE REAL IMPORTANT THINGS TO SAY ABOUT THAT EXPERIENCE, ABOUT WHETHER OR NOT WE FEEL SAFE IN A HOSPITAL, ABOUT WHAT THINGS CAN HELP US STAY OUT OF THE HOSPITAL. AND WE NEED TO BE ABLE TO BE ABLE TO TALK ABOUT THAT AND BE HEARD AS WELL. >> THANK YOU. JOHN? >> JOHN: I THINK THAT THIS COMMENT HIGHLIGHTS THE FACT THAT THERE IS A VAST GULF IN OPPORTUNITY, STRATEGIES, LIFE, THAT WILL WORK FOR PEOPLE WITH HIGHER AND LOWER COGNITIVE ABILITIES IN GENERAL. IN THE TYPICAL HUMAN POPULATION, WE DO NOT REALLY PRESUME THAT A BRIGHT ARTICULATE PERSON'S APPROACHES TO SUCCEEDING IN LIFE WILL BE THE SAME AS A PERSON WITH VERY LIMITED COGNITIVE ABILITIES. SOMEHOW WE ACCEPT THAT. AND WE TRY AND SUGGEST THAT THE SAME SHOULD BE TRUE IN AUTISM. AND IT SIMPLY ISN'T. I THINK THAT THERE ARE AUTISTIC PEOPLE WITH SIGNIFICANT COGNITIVE DISABILITIES WHO NEED DIFFERENT THINGS FROM A PERSON LIKE ME, WHO DOESN'T HAVE THOSE PARTICULAR DISABILITIES, EVEN THOUGH I'M DISABLED BY AUTISM. SAM IS DISABLED BY AUTISM. WE AREN'T DISABLED BY THOSE THINGS. THAT DOESN'T MAKE US FRAUDS OR IMPOSTERS. IT ALSO DOESN'T MAKE US PARTS OF TWO DIFFERENT TRIBES. WE SOMEHOW CAN RECOGNIZE THAT PEOPLE WITH COGNITIVE LIMITATIONS ARE HUMANS JUST LIKE US SITTING HERE AT THE TABLE. THEY ARE NOT SOME KIND OF DIFFERENT ANIMAL FROM US. WHY CAN'T WE RECOGNIZE THAT IN THE AUTISM FIELD? WHY CAN'T WE JUST ACCEPT THAT YES, THERE ARE VERY DISPARATE NEEDS FOR PEOPLE IN DIFFERENT PLACES ON THE SPECTRUM. AND WHEN YOU TALK ABOUT WALKING THE AUTISM WALK FOR 30 YEARS, I WALKED THE AUTISM WALK 60 YEARS. I'M A ACTUAL AUTISTIC PERSON. ISN'T THAT SOMETHING? WHAT ABOUT SAM? AND YOU KNOW, I'M VERY STRONGLY. IT IS VERY DISCOURAGING TO ME TO SEE PEOPLE WHO ARE OBLIVIOUS TO THAT AND THAT KIND OF COMMENTARY FROM A MEDICAL PROFESSION. AGAIN, I WOULD THINK THAT WE SHOULD BE ABLE TO DO BETTER. IT'S JUST BOTHERSOME TO ME. ARE WE ONLY COMMENTING ON THAT PARTICULAR THING? OR CAN I OFFER THOUGHTS ON SOME OF THESE OTHER COMMENTS AT THE SAME VAIN? >> WE'LL HAVE TIME FOR OTHER COMMENTS AFTER. LET'S FINISH WITH THIS ONE AND WE'LL MOVE ON TO THE NEXT. SO DAVID? >> I WANT TO THANK DR. WATELL FOR HER COMMENTS. I DON'T THINK HER COMMENTS WERE INTENDED TO DISPARAGE ANYBODY. I THINK THEY WERE TRYING TO ADDRESS THE ISSUE THAT MANY PEOPLE WHO HAVE FAMILY MEMBERS WHO ARE PLAGUED BY SOME OF THESE VERY SERIOUS MEDICAL PROBLEMS, FEEL LIKE THEY MAY BE UNDER REPRESENTED ON THE IACC. AND I THINK IT'S IMPORTANT -- I AGREE WITH EVERYTHING YOU SAID. BUT I THINK IT'S IMPORTANT TO REMIND OURSELVES THAT THERE ARE FAMILIES THAT EVERY DAY GET UP AND DEAL WITH A CHILD THAT HAS SEVERE GASTROINTESTINAL PROBLEMS OR SOMEHOW OTHERWISE INJURIOUS. >> HOW CAN PEOPLE FORGET I SAID THOSE VERY THINGS? >> I'M NOT SAYING THAT YOU DIDN'T SAY IT. I'M SAYING IT'S IMPORTANT FOR US TO GET TESTIMONY, BROADER TESTIMONY TO REINFORCE THE IDEA THAT WE HAVE TO CONSIDER THAT SUB SET OF THE POPULATION AS WELL. THAT'S ALL I'M SAYING. AND I THINK WE HAVE TO GO BEYOND FRAGMENTING AND SORT OF PITTING ONE AREA OF THE AUTISM SPECTRUM AGAINST THE OTHER. THAT IS NOT VERY PRODUCTIVE. I THINK WE HAVE TO, AS YOU SAID, I AGREE, ADDRESS DIFFERENT ISSUES WITH DIFFERENT INDIVIDUALS WHO HAVE DIFFERENT FORMS OF DISABILITY ON THE AUTISM SPECTRUM. MY ONLY POINT IS THAT I THINK WE DO HAVE TO HEAR EVERY ONCE IN A WHILE FROM PEOPLE WHO ARE GOING TO HIGHLIGHT THESE MEDICAL AND SERIOUS PSYCHIATRIC PROBLEMS THAT AGAIN ARE VERY DILLTORIOUS TO FAMILIES. I'M NOT SAYING YOU HAVEN'T HIGHLIGHTED THAT. I'M SAYING IT IS IMPORTANT FOR US TO HEAR FROM OTHERS AS WELL. >> I'M NOT OPPOSED TO THAT BUT I WOULD POINT OUT WITH ALL DUE RESPECT TO THOSE FOLKS, 10 YEARS AGO, THE ONLY ADVOCACY THERE WAS, WAS PARENT ADVOCACY. NOW THERE ARE AUTISTIC PEOPLE SPEAKING UP FOR OURSELVES. AND YOU HAVE SAID THAT WE NEED MORE PARENT ADVOCACY. PARENT ADVOCACY IS ALL THERE WAS. AND WE STILL GOT IT. >> SO, JUST WANTED TO ADD IN, AND I REALLY APPRECIATE EVERYBODY'S COMMENTS AND I KNEW WHAT I HAD TO SAY WOULD BE SOMEWHAT INFLAMMATORY. I OFTEN GET INVOLVED IN INFLAMMATORY TOPICS. BUT I THINK THAT EVERYBODY IS ON THE SAME PAGE AND REALLY REINFORCING AGAIN, LIKE THE SAME IDEA THAT ALONG THE SPECTRUM, THERE ARE SO MANY DIFFERENT PEOPLE WITH MANY DIFFERENT NEEDS AND WE DEFINITELY IN OUTPATIENT SERVICES NOT ON THE INPATIENT UNIT BUT OUTPATIENT AT KENNEDY KREIGER. >> WE ARE TALKING ABOUT PEOPLE WHO HAVE BEEN INPATIENT AT KENNEDY COLLEAGUER AND WHO ARE IN OUR MEMBERSHIP. >> THE CHILDREN THAT WE WORKED WITH ON THE INPATIENT FLOOR ON THE NEUROBEHAVIORAL UNIT WHERE I WORK, ARE ALL PEOPLE IN THE VERY SEVERE END OF THE SPECTRUM, MOST OF THEM FUNCTIONING ON A TODDLER LEVEL AT BEST, MAYBE THIRD OR FOURTH GRADE LEVEL. I REPRESENT THE CHILDREN WITH AUTISM WHO ARE ADMITTED INPATIENT FOR EXAMPLE WHO HAVE DETACHED A RETINA AND NOW REQUIRE RETINAL REATTACHMENT SURGERY AND WILL SPEND A WEEK IN THE NIKU FROM THAT TYPE OF SURGERY. >> WE HAVE STAFF WHO HAVE DETACHED A RETINA AND HAD RETINAL REATTACHMENT SURGERY IN OUR ORGANIZATION. AND THEY THEN GET CALLED TOO HIGH FUNCTIONING TO SPEAK FOR THE OTHER PEOPLE WHO DETACHED A RETINA AND NEED REATTACHMENT SURGERY. I WANT TO MAKE IT REALLY CLEAR, WE ARE TALKING ABOUT EXACTLY THE SAME PEOPLE. >> OKAY. SO, YOU MAY KNOW PEOPLE I HAVEN'T WORKED WITH ON THE INPATIENT UNIT. JUST SPEAKING FROM MY PERSPECTIVE AND WORKING WITH THESE CHILDREN AND THEIR FAMILIES OVER THE PAST 15 YEARS, THESE FAMILIS OFTEN FEEL LIKE THEY DON'T HAVE A VOICE. THEIR CHILDREN CAN'T ADVOCATE FOR THEMSELVES, MANY TIMES THEIR FUNCTIONING LEVELS PRECLUDE THEM FROM DOING THAT. AND THEY DON'T KNOW WHO TO TURN TO. THEY FEEL THEY ARE ABANDONED EVEN WITHIN THE AUTISM COMMUNITY THEMSELVES WHILE THEIR CHILDREN ARE CHILDREN AND THEN WHEN THEIR CHILDREN BECOMES ADULTS IT BECOMES MORE OF A DIRE SITUATION. I'M JUST TRYING TO SPEAK TO THAT PART OF THE AUTISM COMMUNITY THAT I HOPE THAT WE CAN CONTINUE TO PROVIDE APPROPRIATE ATTENTION FOR BECAUSE THE CHILDREN CAN'T COME AND ADVOCATE FOR THEMSELVES. AND MANY TIMES THEIR FAMILIES ARE SO OVERWHELMED BY THE NEEDS OF TAKING CARE OF THOSE KIDS THEY ALSO DON'T FEEL LIKE THEY HAVE THE OPPORTUNITY TO ADVOCATE OR THAT THEY NECESSARILY WILL BE HEARD BECAUSE THEY REPRESENT SOMETHING VERY DIFFICULT. >> I ABSOLUTELY RESPECT THAT THERE ARE THESE -- AS AUTISTIC PEOPLE, WE HAVE ISSUES THAT CAN BE VERY SIGNIFICANT. WE HAVE MEDICAL ISSUES. I JUST WANT TO MAKE IT INCREDIBLY CLEAR, PEOPLE WHO ARE FUNCTIONING AS YOU DESCRIBE IT ON A FOURTH AND FIFTH GRADE LEVEL, ARE -- I HAVE PEOPLE THAT HAVE BEEN DESCRIBED THAT WAY AND WHO ARE IN OUR MEMBERSHIP. THEY ARE OUR MEMBERS AND I'M HERE TO TALK ABOUT MY MEMBERS ISSUES. THEY DO SELF ADVOCATE. THEY DON'T SELF ADVOCATE IN THE SAME WAY THAT YOU MIGHT BE EXPECTING THEM TO, BUT ONCE THEY REACH ADULTHOOD AND THEY HAVE THE SUPPORT TO MAKE THEIR WISHES HEARD, THEY MAKE THOSE WISHES HEARD AND THEY OFTEN JOIN ASAN. THEY HAVE -- WE HAVE MEMBERS WHO HAVE SPENT DECADES IN INPATIENT SETTINGS AND WHO HAVE EXITED THE TO SELF ADVOCATE. SO OFTEN WHEN PEOPLE SAY THAT THESE ARE TWO DIFFERENT COMMUNITIES, THEY ARE REALLY NOT TWO DIFFERENT COMMUNITIES. THEY ARE OFTEN THE SAME COMMUNITY AND THAT IS WHAT CAN SOMETIMES FEEL FRUSTRATING FOR PEOPLE TO ASSUME THAT JUST BECAUSE I'M HERE, I'M NOT ON THE WORST DAY OF MY LIFE RIGHT NOW. THIS IS A PRETTY GOOD DAY OF MY LIFE. IF YOU SAW ME ON THE WORST DAY OF MY LIFE, YOU WOULD THINK OF ME AS A COMPLETELY DIFFERENT PERSON. AND IT'S TRUE OF MANY OF OUR MEMBERS. >> SO I'D LIKE TO MAKE ONE LAST COMMENT BEFORE WE NEED TO MOVE ON TO THE NEXT AND DR. GORDON IS BACK. AT THE LAST COUPLE OF MEETINGS, WE HAVE APPRECIATED SOME OF THE COMMENTARY ABOUT IACC MEMBERSHIP THAT HAS BEEN GOING ON AND JUST WANTED TO CLARIFY THAT IACC PUBLIC MEMBERSHIP IS OPEN TO PEOPLE THAT HAVE MORE SEVERE DISABILITIES TO A WIDE RANGE OF PARENTS AND SELF ADVOCATES. WE DO HAVE THE ABILITY TO PROVIDE SPECIAL ACCOMMODATIONS BUT WE DO HAVE A NOMINATION PROCESS. AND IN THE HISTORY OF THE IACC, VERY SEVERE DISABILITIES PUT IN A NOMINATION. AND SO, IN THE FUTURE, WHEN THERE ARE CALLS FOR NOMINATIONS, PLEASE KEEP THAT IN MIND BECAUSE WE ARE OPEN TO HAVING A WIDER VARIETY OF PEOPLE ON THE SPECTRUM OR WHO HAVE FAMILY MEMBERS ON THE SPECTRUM, SERVE. THANKS. SO THEN I'LL TURN IT OVER TO DOCTOR GORDON TO GO TO THE NEXT PUBLIC COMMENT. >> DR. GORDON: I'M SORRY I'M LATE. I LEARNED TODAY WHY THERE ARE RIDE SHARING SERVICES. SHALL WE CONTINUE THEN THE NEXT PUBLIC COMMENTER IS LEUCINNA CLARK. I'M HOPING I'M GETTING THAT FIRST NAME RIGHT. Mrs. CLARK? >> Mrs. CLARK: THANK YOU. >> DR. GORDON: AND FOR TIMING PURPOSES, LET ME AND IF THE THIRD PERSON IS HERE, Mrs. SHERRY CHASE? NO? IF YOU'RE IN THE AUDIENCE, PLEASE IDENTIFY YOURSELF. NO? OKAY. >> Mrs. CLARK: GOOD AFTERNOON. MY NAME IS LEUCINNA CLARK. THANK YOU FOR GIVING MY HUSBAND THE OPPORTUNITY TO BE HERE. WE CAME FROM LOOK LIN, NEW YORK AND IT'S REALLY A PLEASURE HERE -- BLOCK LIN, NEW YORK. AND AS FAR AS RESEARCH IS CONCERNED, DEALING WITH WHAT I HAVE TO SPEAK ABOUT. OUR ORGANIZATION IS CALLED, MY TIMING. AND WHEN WE CREATED THIS 10 YEARS AGO IT FOCUSED ON THE PARENTS. IT'S ALL ABOUT EDUCATING THE PATIENT, EMPOWERING THEM AND GIVING THEM TIME FOR THEMSELVES, KNOWING HOW TO BE INVOLVED IN THE ME TIME ACTIVITIES, TAKING CARE OF THEMSELVES. AND WHAT WE HAVE -- WHAT I HAVE LEARNED WITHIN THE 25 YEARS OF TEACHING AS WELL AS WORKING WITH THE FAMILIES OF CHILDREN WITH AUTISM, I FEEL THAT THE LACK OF PARENTAL SUPPORT AND TAKING CARE OF THEMSELVES WAS VERY IMPORTANT. SO I LOOK AT RESEARCH. RESEARCH IS ALL WONDERFUL AS I SAY, BUT WHILE RESEARCHERS HAPPENING, WHAT IS HAPPENING TO THE PARENT'S LIFE, WHAT ABOUT THE SELF CARE? WHAT ABOUT TAKING CARE OF YOURSELF IN ORDER TO RAISE YOUR CHILD WITH A DISABILITY? SO 10 YEARS AGO, WE CREATED A PROGRAM CALLED, MY TIMING, TO EDUCATE AND ALSO THE PIECE ABOUT SELF CARE AND ME TIME. WE ARE THE ONLY ORGANIZATION IN NEW YORK CITY AND REALLY PROVIDING A ME TIME OR RECREATIONAL PROGRAM FOR PARENTS. SO MY CONCERN IS WHAT ARE WE DOING FOR THE PARENTS? HOW ARE THEY TAKING CARE OF THEMSELVES AND THE RESOURCES THAT ARE BEING PROVIDED? I KNOW THIS FIRST QUESTION WAS ASKED ABOUT THE -- IT'S BLACK AND WHITE OR RACIAL DISSIPATER IN AUTISM AND THE PARENTS BEING REALLY SUPPORTED? AND I'M FROM THE CARIBBEAN, AND WHEN I HEARD AUTISM WAS THE FIRST I CAME TO NEW YORK TO LIVE. AND WE HAVE DISABILITIES IN THE CARIBBEAN BUT IT'S NOT SOMETHING THAT WE TALK ABOUT ALL THE TIME IT'S NOT A DISCUSSION TO SAY, WE ARE HAVING DINNER, MY CHILD IS AUTISTIC OR MY CHILD HAS A DISABILITY. SO I LEARNED MORE ABOUT THIS AND I STUDIED AUTISM AND I BECAME A BEHAVIORAL SPECIALISTS AND LEARNED THAT PROVIDING A VITAL SERVICE IS IMPORTANT BUT WHILE I WAS THERE, I WAS SEEING THE LACK OF SUPPORT FOR PARENTS. WHAT WAS THE PARENT GETTING? WHAT TIME WAS THE PARENT TAKING FOR THEMSELVES? THE PERCENTAGE OF STORES RATES AND FAMILIES SEPARATING IS VERY HIGH NOW -- DEVORCE RATES. WE SAW PARENTS TAKING TIME AND REVITALIZING THEMSELVES AND BECOMING BETTER. WE HAVE BEEN IMPLEMENTING EMOTIONAL HEALTH AND WELLNESS PROGRAM AND TO SEE THE DIFFERENCE IN HOW THE PARENTS WALK IN AND HOW THEY LEAVE. BY LEARNING HOW TO DO SELF CARE, VERSUS SPENDING TIME FOR YOURSELF. KNOWING THAT IT IS IMPORTANT THAT I AM WELL IN MY MIND, BODY AND SOUL AS WELL TO RAISE MY CHILD. SO WHEN YOU'RE DOING RESEARCH AND LOOKING AT WHAT IS OUT THERE AND TRYING TO FIX OR CHANGE THE WAY A PERSON WITH DISABILITY IS, LET'S LOOK AT WAYS OF HOW CAN WE FIND RESOURCES TO HELP THAT PARENT THROUGH THAT JOURNEY? WHAT ARE WE DOING, WHETHER SITTING IN A COMMITTEE OR NOT, TO REACH OUT TO THAT PARENT WHO IS RAISING THAT CHILD WITH DISABILITY? AND WHAT I NOTICED BY HAVING THE RECREATIONAL PROGRAM FOR THE PARENT TO GO OUT TO FORM NEW RELATIONSHIPS, TO BUILD THAT SELF-ESTEEM FOR THEMSELVES BECAUSE I MEAN YESTERDAY I HAD A PARENT CAME IN SHE SAID, Mrs. CLARK, I DIDN'T COME TO GET SERVICES FOR MY CHILD AS I DO ADVOCACY AS WELL. I CAME TO GET SERVICES FOR ME. I FELT SO DEPRESSED. I FELT ALL ALONE. AND I DO NOT KNOW WHERE TO TURN T DOESN'T MAKE A DIFFERENCE IF YOU'RE BLACK OR WHILE OR HAVE ALL THE MONEY IN THE WORLD. AUTISM DOESN'TIC AND CHOOSE WHERE IT LIVES. IT HAPPENS. AND HOW AS WE AS A COMMUNITY EMBRACING THESE PARENTS WHO ARE RAISING THE CHILDREN WITH DISABILITIES? TOO MANY TIMES THERE IS SO MUCH AUSTRIA SIZING. YOU DON'T BELONG. OR YOU DON'T FIT HERE. WHAT ARE WE DOING TO BRING THAT -- THE INDIAN TRIBES -- BRING IN NA COMMUNITY TOGETHER? BRINGING THAT WHOLENESS, AND THAT IS WHAT I'M SEEING WHAT PARENTS NEED. SO WE NEED TO DO A SURVEY, DO SOME MORE RESEARCH IN LOOKING AT WHEN THE PARENT WALKS INTO THE ORGANIZATION AND WHEN THEY LEAVE BECAUSE THE ABILITY TO RECEIVE A SERVICE LIKE THE RECREATIONAL PIECE AND EMOTIONAL PIECE IS HELPING THEM TO CHANGE THEIR LIVES TO, CHANGE THEIR CHILDREN'S LIFE. IF A PARENT, I BELIEVE, IF THE PATIENT IS NOT WELL IN MIND, BODY AND SOUL, HOW CAN THE CHILD BE WELL? SO I WANT TO THANK YOU FOR THIS OPPORTUNITY OF BEING HERE BECAUSE IT'S REALLY BRINGING US IN THIS COMMUNITY MORE AWARENESS. WHETHER BLACK, WHITE OR WHATEVER YOU ARE, OF HOW WE EMBRACE THE INDIVIDUALS AND EMBRACE THE PARENTS WHO ARE RAISING THESE CHILDREN. SO I THINK RESEARCH NEEDS TO BE DONE LIKE WHEN A PARENT GOES OUT TO GO BOWLING, THE STRESS -- YOU SEE THE STRESS RELEASE, JUST REMOVING FROM THE PARENT'S NAIS THEY SCORE A PIN OR A STRIKE. THE LAUGHTER. HEAR THE LAUGHTER OF THE PARENT AT THAT MOMENT WHEN YOU KNOW IN THE NIGHT THE PARENTS ARE CRYING BECAUSE WHY IS IT ME THAT HAD A CHILD WITH DISABILITY? OR WHY AREN'T I GETTING THE SERVICES MY CHILD NEEDS? SO HAVINGERER RACIAL ACTIVITIES AND THAT EMOTIONAL HEALTH AND WELLNESS IN WHATEVER YOU'RE DOING IS SO IMPORTANT. THAT'S WHY I CAME ALL THE WAY FROM BROOKELINE TO SHARE THAT BECAUSE WE NEED TO EMBRACE EACH OTHER BETTER AND THE PARENTS AND PROVIDE THE RESOURCES OF HAVING A NIGHT OUT, HAVING A WEEKEND OUT. ONE OF THE KNOWLES THIS YEAR, WE HAD A FUNDRAISER IS TO BE ABLE TO TAKE PARENTS ON A RETREAT. HALF OF MY PARENTS HAVEN'T HAD A DATE IN A LONG TIME. WHEN THEIR CHILD WAS BORN, THEY FORGET ABOUT DATING, FORGET ABOUT ROSES, GOING OUT. WE ARE HAVING A VALENTINES COMING UP AND I GOT 5 COUPLES TO GO OUT. THEY HAVEN'T DONE THAT. AND IT'S LIKE, LOSING THE ESSENCE OF YOUR LIFE. WHAT IS LIFE ABOUT? WHAT IS OUR PURPOSE? AS PROVIDERS OR COMMITTEE MEMBERS, LET'S EMBRACE THESE FAMILIES. LET'S FIND PLACES, FIND PROGRAMS THAT CAN GIVE THEM THAT LIFE AGAIN. SO I WANT TO THANK YOU SO MUCH AND I REALLY APPRECIATE BEING HERE. AND I WILL BE LACK IN APRIL BECAUSE I'M INTERESTED IN THE EMOTIONAL WELLNESS AND JOB FORCES FOR FAMILIES OF THESE INDIVIDUALS. I HOPE THAT AS ALL CONTINUE LOOKING AT POLICIES AND DOING CHANGES, LOOK AT THE FAMILIES AND PARENTS. HOW ARE WE SUPPORTING THEM? SO THEY CAN GO THROUGH THIS JOURNEY. SO THANK YOU VERY MUCH. >> THANK YOU. [ APPLAUSE ] >> ANY QUESTIONS? >> THANK YOU, MRS. CLARK. ANY QUESTIONS OR COMMENTS FROM THE COMMITTEE? PLEASE. >> Mrs. CLARK, I WOULD JUST LIKE TO THANK YOU FOR -- AND REALLY TO COMMEND YOU FOR COMING HERE AND EMBRACING THE POTENTIAL POWER OF COMMUNITY. AND HOW THAT TRANSSENDS DISABILITY, RACE, ECONOMIC OPPORTUNITIES, ANYTHING ELSE. COMMUNITY IS THE THING THAT CAN SAVE US AND I WANT TO PARTICULARLY CONTRAST THAT WITH THE DIVISIVENESS OF THE PREVIOUS COMMENT. WE NEED TO COME TOGETHER, NOT BREAK APART. SO THANK YOU. >> DAVID? >> SOUNDS LIKE A WONDERFUL PROGRAM. CAN YOU TELL US HOW THE CHILDREN ARE CARED FOR WHEN THE PARENTS GO OUT? [ OFF MICROPHONE ] >> THANK YOU. ONE OF THE PROVIDERS FROM NEW YORK STATE, WHAT WE DO IS TRY AND CONNECT THE PARENTS TO OTHER PROVIDERS WHO HAVE RESPITE. SO WE CONNECT THEM. SO WE START FOR EXAMPLE, IF YOU'RE GOING TO GO BOWLING WITHIN A MONTH, THERE ARE SOME PROVIDERS WHO PROVIDE RESPITE. WE SET ALL PARENTS UP IN A WAY THAT, CALL THIS PROVIDER OR EVEN TO GET SOMEONE WHO YOU MAY KNOW OR TRUST WITH YOUR CHILD. AND THERE IS REIMBURSEMENT. SO THEY GET REIMBURSEMENT FOR THAT. WE PUT THEM ON A PACE THAT YOU KNOW WHAT, THIS IS YOUR LIFE. SEE HOW WE CAN GET SOMEONE TO TAKE CARE OF YOUR CHILD. MAYBE SOMEONE YOU KNOW. WHO YOUR CHILD IS TRUSTED WITH. SO LET'S DO THAT. ALSO WE GET SOME FUNDING FROM THE STATE. NOT MUCH BUT WE DO FUNDRAISERS BECAUSE I'M QUITE OUT-OF-THE-BOX. I DON'T TAKE NO FROM ANYONE. I BELIEVE NO IS ON. I KNOW THERE IS SO MUCH POSSIBILITIES AND OPPORTUNITIES OUT THERE FOR FAMILIES. IT'S JUST LIKE I GO OUT THERE LIKE A BULLDOG SOMETIMES FOR THE PARENTS BECAUSE THEY NEED A LIFE AND THEY NEED TO ENJOY NOT BECAUSE YOU HAVE A CHILD WITH DISABILITY. YOUR LIFE ISN'T DOOM. GO OUT THERE AND LIVE LIFE. JUST AS FULL AS YOU CAN. SO IF WE CAN PROVIDE OUTLETS FOR THESE FAMILIES TO HAVE A LIFE AGAIN, LET'S DO THAT. >> THANK YOU. >> THANK YOU. OTHER COMMENTS? WE DO HAVE ONE ADDITIONAL PUBLIC COMMENT. Mrs. CHASE? >> I'M HERE. SORRY,IST JUST GIVING A TALK. >> PLEASE USE THE PODIUM AT THE FRONT. THANK YOU. Mrs. SHERRY CHASE. >> GOOD AFTERNOON. I APOLOGIZE. I WAS GIVING A TALK ON RADIATION PROTECTION FOR UNIVERSITY OF MARYLAND TRYING TO SAVE THE WORLD. SO HERE I GO. BECAUSE THIS IS NEAR AND DEAR TO ME. I GUESS I'LL JUST READ FROM HERE. MY NAME IS SHERRY CHASE. I AM THE MARYLAND STATE HEALTH LEADER, A SURGICAL CONSULTANT AND A TELEVISION SHOW HOST. MY EDUCATION IS AS A PHARMACOLOGIST AND EDUCATOR AND MOST OF ALL, I'M A PARENT TO A YOUNG 21-YEAR-OLD YOUNG MAN WITH AUTISM. WHO I BY THE WAY LOVE DEARLY. HE HAS 23-YEAR-OLD BROTHER WHO IS A MEDICAL ENGINEER AND TRYING VERY HARD TO MAKE AMAZING DEVICES FOR SELF-REGULATION FOR PEOPLE WITH AUTISM. SO I SALUTE BOTH OF MY KIDS. HERE WE GO. I'M OUT OF BREATH. THIS IS THE MOST CHALLENGING AND HEARTBREAKING JOB. IT IS ONE WHERE HOPES AND DREAMS HAVE BEEN ROBBED OF MY CHILD AND MYSELF. THE CLIFF THAT WE FELL DOWN IS A BOTTOMLESS PIT WITH TANGLES AND TWISTS AND NO MAP TO FOLLOW. YES, THERE IS PLENTY OF DAYS THAT ARE FILLED WITH ROSES WITH YOU MORE ARE STRUGGLES. THE AGENCIES ARE UNEQUIPPED TO GUIDE AND EDUCATE THOSE WITH AUTISM AND THE POST-HIGH SCHOOL EDUCATION SURELY NOT CUSTOMIZABLE FOR THOSE WITH AUTISM. THIS IS A SHAME. DEVELOPMENTAL DISABILITIES, ADMIN HAS NO WATCHDOGS SO PEOPLE ARE FESTERING IN THESE PLACES. THESE WELL INTELLIGENT BURDENED INDIVIDUALS ARE PUSHED ASIDE, UNDERESTIMATED AND LEFT TO SWEEP, BAG, AND FESTER WHETHER THEY HAVE THE DRIVE TO ACCEL OR BECOME EXTRAORDINARY CONTRIBUTORY CITIZENS. WE MUST PARTNER WITH AGENCY AND RETIREES AS GUIDES. THEY MUST BE VOCATIONAL PROGRAMS, INTERVENTIONS AS WELL THAT CAN BE TAUGHT AND THEN REPLICATED AT HOME. COLLEGES NEED TO CREATE VISUAL PROGRAMS SO THAT OUR CITIZENS CAN FLOURISH. PLEASE, I UNDERSTAND TRYING TO PREVENT AUTISM BUT THESE PEOPLE HERE ARE ALIVE RIGHT NOW AND WE NEED TO HELP. INSTEAD, IMMEDIATE LESS DEMAND OF VOCATIONAL EDUCATIONAL AND INTERVENTIONAL PROGRAMS ARE REQUIRED TO BE CUSTOMIZED TO THOSE OF US WHO THINK IN PICTURES. P.M. THERE ARE THREE POINTS I'D LIKE TO MAKE. FIRST OF ALL, WE HAVE A WEALTH OF KNOWLEDGE AND RESOURCES IN OUR YOUTH TODAY ESPECIALLY IN OUR MASTER'S DEGREE STUDENTS TRYING TO FIND THEIR PURPOSE AND MAKE IMPACT IN THE WORLD. THESE STUDENTS ARE MOTIVATED IN SEVERAL WAYS. THEY SHOW THEIR DESIRE TO CONTINUE TO LEARN AND MAKE AN IMPACT. THEY ARE NOT FUNDED AND HENCE THEY WOULD BE APT TO RESPOND WELL TO GRANT OFFERINGS TO DEDICATE THEIR TIME TO FIND INTERVENTIONS AND DEVICES TO HELP WITH ANXIETY, SELF-REGULATION, AND ADVANCE INDEPENDENTS AREAS FOR PEOPLE ON THE SPECTRUM. --ED ADVANCEMENTS. RECOGNITION IS WHAT IS DESIRED. LET US MAKE NATIONAL BOARDS TO THE ADVANCEMENT OF AUTISM DEVICES AND INTERVENTIONS TO INSPIRE THESE STUDENTS AND OTHER ACADEMIA TO CONCENTRATE EFFORTS ON IMPROVING THE LIVES OF THOSE WITH AUTISM. SECOND, TIRED WORKFORCE NEEDS TO MAKE SOME MONEY. LET'S FACE IT, - ITS NOT CHEAP TO LIVE HERE. RIGHT? LET'S ENCOURAGE THROUGH OUR TAX CREDITS AND GRANTS THESE SAME PEOPLE WHO HAVE PERFECTED THEIR SKILLS, ENCOURAGE THEM TO START MENTOR PROGRAMS FOR THOSE ON THE SPECTRUM. THIRD, WE NEED VOCATIONAL PROGRAMS THAT TEACH PEOPLE ON THE SPECTRUM IN THE METH THAT THEY CAN ACCEL -- METHOD. AUTO LET US OFFER ALTERNATIVE WAYS TO DELIVER MESSAGES AND KNOWLEDGES. LET US START INCENTIVE PROGRAMS FOR BUSINESSES TO START APPRENTICESHIPS TO ALLOW THOSE N. ON THE SPECTRUM TO CHANGE AND GIVE THEM THE CHANCE TO LEARN AND PRACTICE THEIR NEW SKILLS IN REALTIME ENVIRONMENTS. AND FINALLY, LET'S LOB TOW ASK FOR THOSE WHO DO EMPLOY THOSE WITH SPECIAL NEEDS THE ABILITY TO KEEP VERY PRECIOUS AS LONG AS THEY MAINTAIN A HIGH STANDARD OF WORK ENVIRONMENT AND CONTINUING EDUCATION. WITH THIS, WE WILL HAVE A WORKFORCE THAT WILL CONTINUE TO ACCEL AND THEN COULD EVENTUALLY PAY BACK AS FUTURE MENTORS. WITH THIS, I THANK YOU SO MUCH. TWO AREAS I WANT TO MENTION, I STARTED TO SAY MY SON, HIS COMPANY'S NAME IS GAYA, A MASTER STUDENT AT NORTHWESTERN. I'M PROUD OF HIM AND 15 OTHER WERE ENGINEERS AND COMPUTER INDIVIDUALS WHO ON THEIR OWN DIME GO TO CONTESTS, TAKE EVERY PENNY THEY HAVE TO DEVELOP DEVICES TO HELP PEOPLE WITH AUTISM TO REGULATE THEMSELVES TO EMPOWER THOSE PEOPLE ON THE SPECTRUM. AND I REALLY RESPECT THEM FOR THAT. AND FINALLY, A DEAR FRIEND OF MINE IS TRYING TO CREATE A MODEL THAT CAN BE SPREAD ACROSS THE NATION. I'M HELPING HIM WITH THIS. WE ARE TRYING TO START ACADEMIES THAT WOULD BE SIMILAR TO COLLEGES WHERE SOMEONE DOES, EITHER USE THEIR SOCIAL SECURITY MONEY OR OTHER TYPES OF GRANTS OR POCKET MONEY TO GO IN AND LEARN DIFFERENT TYPES OF SKILLS IN A ROTATING VOCATIONAL SCHEMATIC. AND THEY'LL BE BUSINESSES THAT WILL BE CREATED AND OWNED BY THIS ACADEMY WHERE TO BE ABLE TO WORK WITH THOSE BUSINESSES, YOU MUST BE A GRADUATE OF THE ACADEMY. IT WILL BE IN THE BYLAWS OF EACH BUSINESS THAT 25% OF THE WORK STAFF MUST BE PEOPLE WHO ARE ON THE SPECTRUM. THEY HAVE ALREADY STARTED ONE AND DALTILE SAID THEY WILL TAKE THE PRODUCTS WHICH ARE MADE, THIS IS SOMETHING THAT CAN BE REPLICATEREPLICATED AND MODELED ACROSS THE COUNTRY AND THE REASON PERSONALLY I FEEL IT IS SO IMPORTANT IS MY SON, ALEX, WHO IS 21, CAME OUT OF HIGH SCHOOL. THIS IS A CHILD THAT WAS IN GT ENGINEERING AND VERY LOW IN THE VERBAL AREA BUT FABULOUS IN THE INLET ELECTUAL AREA. HE WENT TO COLLEGE AND BECAUSE OF HIS STEMMING, HE JUMPED ONE TIME IN HIS CLASS AND MADE A SOUND AND THEN SECONDLY HE WAS IN CLASS AND ALL HIS CLASSMATES WERE LEAVING AND HE WENT UP TO STAND. THE TEACHER CAME OVER AND PUT HIS HAND ON MY SON'S SHOULDER. FOR 21 MINUTES WOULDN'T ALLOW MY SON TO EXIT THE ROOM. EACH TIME HE SAID ALEX LEAVE. EVENTUALLY MY SON GRABBED HIS TEACHER'S WRIST AND SAID ALEC LEAVE. HE WAS EXPELLED FROM THE SCHOOL. THAT IS UNNECESSARY. WE NEED TO JUST MAYBE ENLIGHTEN PEOPLE IN COLLEGES THAT WE NEED TO RESPECT PEOPLE ON THE AUTISM SPECTRUM EVEN IF THEY CAN ONLY UTTER ONE WORD OR WRITE DOWN A WORD. BUT WE NEED TO FASHION IT SO THAT THE EDUCATIONAL PIECES ARE IN A AREA THEY CAN UNDERSTAND AND TO EDUCATE PEOPLE ON HOW TO WORK WITH INDIVIDUALS WITH AUTISM. SO, I WANTED TO GET IT ALL IN, I APPLAUD EVERY ONE THAT TAKES THEIR VALUABLE TIME TO COME ON THIS COMMITTEE AND OTHERS THAT TRAVEL AROUND THE COUNTRY. THIS IS A DIFFICULT TASK TO PERFECT. WE ARE ALL HOPING TO COME TO FRUITION BUT IF WE COULD STAY ON THE POSITIVE, WE COULD HIGHLIGHT EACH INDIVIDUAL'S SKILL SET AND WORK ON THOSE IN THESE DIFFERENT VARIETY OF SUGGESTIONS I HAD HERE. AND INSTEAD OF WORRYING ABOUT WHAT THEY CAN'T DO, WORRY ABOUT WHAT THEY CAN DO. WE CAN MAKE EACH PERSON TO RISE TO THEIR BEST ABILITY AND CONTRIBUTE TO THIS NATION AND THERE IS NOTHING MORE THAN I THINK ANY PARENT WOULD WANT FOR THEIR CHILD AND ANY PERSON ON THE SPECTRUM WOULD REALLY WISH TO HAVE. THANK YOU FROM THE BOTTOM OF MY HEART. THANK YOU. [ APPLAUSE ] >> ANY COMMENTS FROM THE COMMITTEE? I WOULD MENTION REAL QUICK THAT NIMH WE ARE VERY INTERESTED IN HELPING BOTH ACADEMIA AND SMALL BUSINESS DEVELOP TOOLS LIKE THE ONES DESCRIBED BY Mrs. CHASE THAT CAN BE TAKING ADVANTAGE OF DIGITAL TECHNOLOGIES AND OTHER APPROACHES TO IMPROVE CARE AND TREATMENT FOR INDIVIDUALS WITH AUTISM. JOHN, I SEE YOU AND KEVIN MAYBE ALSO. JOHN START WITH YOU. >> JOHN: I GUESS ISLAND OFFER THIS COMMENT IN THE EVENT ANY LAWMAKERS ARE LISTENING OR READING OUR TRANSCRIPT. OUR LAST COMMENTER SUGGESTED THE IMPORTANCE OF TAX CREDITS TOME LOY PEOPLE WITH DISABILITIES. AND I JUST WANT TO PUT THAT IN PERSPECTIVE FOR ALL OF YOU WHO DON'T KNOW WHAT THAT MEANS. RIGHT NOW SOCIAL SECURITY WILL HAPPILY GIVE A DISABLED PERSON 25, 30,000 DOLLARS A YEAR IN CASH AND HOUSING SUPPORTS TO LIVE DISABLED. SOMEHOW, WE ARE WILLING TO GIVE AN EMPLOYER 2300 DOLLARS TO EMPLOY AN AUTISTIC PERSON. AND I GUESS I WOULD ASK YOU, WHAT IS WRONG WITH THAT PICTURE? WE'LL PAY 25 GRAND A YEAR FOR A LIFETIME TO SUPPORT A PERSON ON DISABILITY AND WE'LL GIVE 2500 BUCKS AS A CREDIT TO AN EMPLOYER WHO PUTS THAT PERSON TO WORK WITH ALL DUE RESPECT, IT OUGHT TO BE BACKWARDS! WE NEED TO LOOK AT A TAX CREDIT THAT IS A SERIOUS ENOUGH AMOUNT OF MONEY THAT EMPLOYERS WILL DO THE RESEARCH, FIGURE OUT THE TECHNIQUES, AND TAKE THE STEPS TO EMPLOY PEOPLE AND KEEP THEM EMPLOYED. 2500 BUCKS OR 2300 BUCKS IS TALK NOT REAL ACTION. >> THANK YOU, JOHN. KEVIN? >> KEVIN: I WANTED TO THANK THE SPEAKER FOR THE COMMENTS. VERY EXCITING, PARTICULARLY THE DESCRIPTION OF THE TRAINING PROGRAM. I DIRECT THE AUTISM AND NEURODEVELOPMENTAL DISORDERS INSTITUTE AT GEORGE WASHINGTON UNIVERSITY. ONE OF THE THINGS THAT WE ARE FOCUSED ON RIGHT NOW IS TRYING TO BUILD A SCHOOL OR COLLEGE WITHIN THE COLLEGE THAT FOCUSES ON THE TRANSITION PERIOD FROM HIGH SCHOOL INTO COLLEGE, TAKING KIDS IN WHAT WOULD HAVE BEEN THEIR FINAL YEAR OF HIGH SCHOOL, AND HELPING THEM WITH THAT TRANSITION, PARTICULARLY INTENSIVE PROGRAM WHERE WE ARE USING DIFFERENT NEUROSCIENCE TECHNIQUES TO TRY TO UNDERSTAND WHAT THE KIDS WOULD BE BEST AT LEARNING. AND PAIR THEM UP WITH THAT AND THEN PROVIDE VERY CAREFULLY-PLANNED PROGRAMS TO HELP MAKE COLLEGES A SUCCESS. BECAUSE WHAT WE ARE SEEING FROM THE LITERATURE IS THAT IF OUR KIDS END UP BACK HOME, TRUE AUTISM OR NOT, BUT IF THEY END UP BACK HOME WITH AUTISM, THEY ARE PARTICULARLY AT RISK FOR NOT LEAVING AGAIN. SO WE ARE TRYING TO HAVE THAT OPPORTUNITY THAT POSTBAC PROGRAM OR POST-HIGH SCHOOL PROGRAM WHERE THEY CAN SAFELY HAVE FAILURE EXPERIENCES, BUT WE ARE THERE TO HELP PROVIDE THAT SAFETY SCHNET OPPORTUNITY TO SUCCEED. WE TALK ABOUT IT LIKE HOGWARTS FOR AUTISM. AND WE ARE PARTICULARLY INTERESTED IN PARTNERING WITH DIFFERENT TECH COMPANIES BECAUSE OF WHERE WE ARE LOCATED IN VIRGINIA IS IN THE HEART OF AMAZON, GOOGLE, DATA CENTERS AND DIFFERENT MAJOR CYBERSECURITY FIRMS. SO, WE LOVE TO TALK WITH YOU AND HAVE YOU OUT AND TALK FOR ABOUT POTENTIAL COLLABORATIONS BECAUSE I THINK THAT THIS IS A REAL BIG NEED IN THE COMMUNITY, SOMETHING THAT IS VERY IMPORTANT TO DO. >> DR. GORDON: WE SHOULD MOVE ON. WE NOW HAVE THE GIULIANA RAVA FROM THE OFFICE OF AUTISM RESEARCH COORDINATION. NIMH IS GOING TO PRESENT A SUMMARY OF THE WRITTEN PUBLIC COMMENTS. >> JULIANNA RAVA: HELLO. SINCE THE OCTOBER MEETING. THE IIAC MEETING RECEIVED PUBLIC COMMENTS FROM 9 COMMENTERS AND WE ORGANIZED THESE UNDER 6 BROAD TOPICS. THE COMMITTEE HAS BEEN PROVIDED COMMENTS IN FULL BUT WILL BE SUMMARIZED BRIEFLY HERE. TOPIC ONE, THE ROLE OF THE I ACK. FOUR COMMENTS WERE RECEIVED ON THIS TOPIC. DR. DEBASIS THANKED THE I ACK FOR PUBLICLY POSTING ON LINE HIS WRITTEN COMMENTS SUBMITTED IN ADVANCE OF THE OCTOBER IIAC MEETING AND SHARED A RECOMMENDATION TO THE NOBEL PRIZE COMMITTEE. DR. SIMON THANK IACC MEMBER FOR REPRESENTING THE PERSPECTIVES OF PARENTS OF MINIMALLY VERBAL CHILDREN AT THE OCTOBER I ACK MEETING, HOWEVER SHE ASKED THAT WRITTEN PUBLIC COMMENTS BE DISCUSSED MORE THROUGHLY NOT ONLY SUMMARIZED AND MORE TIME BE ALLOTTED FOR DISCUSSION BY THE IACC. MICHELLE KRUEGER SHARED INSPIRES FROM HER EXPERIENCES AS AN ADULT AND OFFERED TO SHARE HER PERSPECTIVES. Mrs. JOHNSON LOOKS FORWARD TO RECEIVING E-MAIL UPDATES THROUGH THE IACC LIST SERVE TO HELP HERBERT INFORM URBAN COMMUNITIES ABOUT THE POLICIES AND VISION. TOPIC TWO IS TRANSITION TO ADULTHOOD AND ADULT SERVICES. THREE COMMENTS WERE RECEIVED ON THIS TOPIC. SHANNON ROSA SHARED HER CONCERNS ABOUT THE AVAILABILITY OF INTEGRATED HOUSING OPTIONS FOR HER AUTISTIC ADOLESCENT SON. SHE URGED THE IACC TO HELP ENSURE INTEGRATED HOUSING OPTIONS ARE MORE READILY AVAILABLE AND TO RECOGNIZE SEGREGATED HOUSING AS ISOLATING AND DEHUMANIZING. DR. EILEEN SIMON DESCRIBED THE CHALLENGES OF HER AUTISTIC ADULT SON'S CARE, HIS ISSUES WITH WANDERING AND DIFFICULT PARTICIPATING IN DAY PROGRAMS. AUTISTIC SELF ADVOCACY NETWORK THANKED THE IACC FOR INTEREST IN TRANSITION OF AUTISTIC PEOPLE TO ADULTHOOD AND PRAISED RECOMMENDATIONS IN THEIR RECENT HHS REPORT TO CONGRESS ON TRANSITION AGE YOUTH WITH ASD. HOWEVER, THEY CAUTIONED AGAINST THE NOTION THAT TRANSITION AGE, AUTISTIC YOUTH ARE SIGNIFICANTLY DIFFERENT POPULATION FROM OTHER YOUTH WITH INTELLECTUAL AND DEVELOPMENTAL DISABILITIES. AND THEREFORE REQUIRE AUTISM SPECIFIC TRANSITION SUPPORTS. TOPIC 3 CONCERN ABOUT MEDICAL PRACTICES. TWO COMMENTS WERE RECEIVED ON THE TOPIC. A DOCTOR SHARED SEVERAL E-MAILS HE SENT TO OTHER COMMITTITIES EXPRESS CONCERNS ABOUT BRINGING RESULTING FROM INADEQUATE TREATMENT OF HYPOXIA IN NEWBORNS NEWBORNS. DR. SIMON ASKED THE IACC TO DISCUSS HER COMMENTS DESCRIBING POTENTIAL LINKS BETWEEN AUTISM AND BRAIN INJURIES RESULTING FROM UMBILICAL CORD CLAMPING, ASPHYXIA AT BIRTH AND PRENATAL EXPOSURES TO DRUGS AND INFECTIONS. TOPIC 4, STRATEGIC PLAN AND AUTISM RESEARCH PRIORITIES. ONE COMMENT WAS RECEIVED ON THIS TOPIC. THE AUTISM SELF ADVOCACY NETWORK APPRECIATES THAT THE NEW IACC STRATEGIC PLAN IS MORE INCLUSIVE OF SEVERAL ISSUES THAT ARE IMPORTANT TO AUTISTIC COMMUNITY BORNEOL THE IACC TO MORE STRONGLY PRIORITIZE NEED FOR FEDERAL FUNDING ON RESEARCH TOPICS OF BENEFIT ACROSS THE AUTISM COMMUNITY AND THE LIFESPAN. RATHER THAN CONTINUING DISPROPORTIONATE FUNDING FOR RESEARCH ON BIOLOGY, CAUSATION AND TREATMENT OF AUTISM. ALSO PROMOTE INVOLVEMENT OF AUTISTIC RESULTS IN THE RESEARCH PROCESS. TOPIC 5 RESOURCES AND SUPPORT. ONE COMMENT WAS RECEIVED ON THIS TOPIC. Mr. WAYNE CLARK WANTED TO MAKE THE IACC AWARE OF A PARENT SUMMIT HOSTED BY MY TIME, INC. THAT BROUGHT HEALTH CARE PROVIDERS WITH THE PARENTS, GRAND PARENTS AND CAREGIVERS OF THOSE WITH AUTISM AND DEVELOPMENTAL DISABILITIES. TOPIC 6, VACCINES AND AUTISM. ONE COMMENT WAS RECEIVED ON THIS TOPIC. Mr. JOHN BEST BELIEVES AUTISM CAUSED BY MERCURY IN VACCINES AND EXPRESS FRUSTRATION WITH THE IACC. THIS CONCLUDES THE SUMMARY. THANK YOU AGAIN TO EVERYONE WHO SUBMITTED WRITTEN COMMENTS. >> DR. GORDON: THANK YOU. ARE THERE COMMENTS OR RESPONSES TO ANY OF THE WRITTEN COMMENTS? JOHN? >> JOHN: I'D LIKE TO SPEAK TO A COUPLE OF THEM. SHANNON ROSA, COMMENTED THAT SHE THESE WE WILL BE MINDFUL ABOUT THE ISSUES SURROUNDING HOUSING. AND I KNOW IN PREVIOUS IACC'S SAM AND I APPEARED TO DISAGREE WITH EXACTLY WHAT WE WANT OUT OF HOUSING. AND I THINK THAT THAT'S BECAUSE IT'S A REALLY COMPLICATED SUBJECT AND IT IS THING THAT I WANT, AND THEY THINK SAM WANTS TOO, IS A WORLD WHERE, IF SIX WILLIAM AND MARY STUDENTS FROM MY UNIVERSITY CAN GET-TOGETHER AND RENT A HOUSE AND LIVE THERE AND BE COLLEGE STUDENTS, THAT'S OKAY. WHY CAN'T SIX AUTISTIC PEOPLE WHO WANT TO OR WHO ARE RECEIVING SOME KIND OF DISABILITY, WHY CAN'T THEY LIVE IN A HOME TOGETHER? I UNDERSTAND ON THE ONE HAND WE HAVE A LOT OF DEBATE ABOUT WHERE PEOPLE ARE TO OBJECT ABUSE. WHERE WE ARE PROTECTED. BUT I BELIEVE THERE IS ALSO A FUNDAMENTAL ISSUE OF FREEDOM OF CHOICE. AND I FEEL LIKE IN MY QUERIES TO OUR HOUSING DEPARTMENT PEOPLE WHEN THEY HAVE COME TO IACC, THEY HAVE NEVER BEEN ABLE TO GIVE ME A STRAIGHT ANSWER ABOUT WHETHER OR NOT THEY SUPPORT FREEDOM OF CHOICE FOR AUTISTIC PEOPLE AND HOUSING. AND THAT IS A FRUSTRATION TO ME AND SHANNON HAS ECHOED THAT AND I WANT TO REPEAT IT HERE. AND THE OTHER THING THAT I SPEAK TO IS, WE HAD TWO, WHAT YOU MIGHT CALL, OPPOSING COMMENTS. JONATHAN MITCHELL SAID, I THINK THE IACC SHOULD FOCUS MORE ON SCIENTIFIC RESEARCH THAT FINDS A CURE FOR AUTISM AND THEN, JULIA BA IS. COM SAID THAT MORE NEEDS TO BE DONE TO REDIRECT AUTISM RESEARCH AWAY FROM THE MEDICALIZED MODEL OF AUTISM AND RESEARCH THAT BENEFITS AUTISTIC PEOPLE. I'D LIKE TO THINK THAT JULIA AND JONATHAN BOTH ULTIMATELY WANT THE BEST QUALITY OF LIFE FOR AUTISTIC PEOPLE AND THEY WANT US TO LIVE LIVES WITH THE MAXIMUM OF JOY AND THE MINIMUM OF PAIN AND SUFFERING. AND YET, I RECOGNIZE THAT THEY HAVE DIFFERENT VIEWS AND SO WE HEARD ALSO FROM A PARENT ADVOCATE EARLIER AND NOTWITHSTANDING MY DISAGREEMENT WITH HER ATTITUDE TOWARDS THAT, I BELIEVE THAT SHE MAKES A VALID POINT, THAT WE COULD USE MORE DIVERSITY ON THE IACC. AND I WOULD SAY THAT I WOULD SUPPORT AUTISTIC PEOPLE WHOSE VIEWS ARE SHARPLY DIFFERENT THAN MY OWN, JOINING OUR COMMITTEE. AND I WOULD SUPPORT THE RETURN OF PARENTS, ALTHOUGH I WILL SAY THAT PARENTS DOMINATED THE DISCUSSION FOR DECADES. AND I THINK IT IS TIME FOR DIVERSITY AND VOICES. >> I WANT TO MAKE A QUICK COMMENT ABOUT HOUSING JUST TO REMIND EVERYONE ON THE IACC, AND THOSE IN THE AUDIENCE WHO MAY NOT KNOW, THAT THE WORK GROUP PROCESS THAT WE ARE STARTING OUT TO APPROACH, THE FIRST BEING ON THE MEDICAL ISSUES, THAT WAS DISCUSSED THIS MORNING, AND ONE ON HOUSING. I THINK THE COMMITTEE RECOGNIZES THE IMPORTANCE OF TRYING TO WORK THROUGH THE COMPLEXITIES OF HOUSING AND MAKES RECOMMENDATIONS FOR WHAT WE MIGHT DO, FEDERALLY AND NATIONALLY AND I THINK THAT IS SOMETHING THAT WE ARE ACTIVELY PURSUING AND WILL BE DOING SO WITH A WORK GROUP. ALISON, I THINK YOU WANT TO SAY SOMETHING AND THEN DAVID. >> ALISON: I WANTED TO COMMENT ON THE OVERALL 10URE OF THE COMMENTS -- TENURE OF THE COMMENTS WE HAVE BEEN HEARING. I THINK IN THE COMMENTS TODAY, THE ORAL COMMENTS, WRITTEN COMMENTS, THE COMMENTS IN OCTOBER, WHAT WE ARE HEARING IS THAT THERE ARE PARENTS WHO ARE OR HAVE CHILDREN AND WHO ARE VERY SERIOUSLY AFFECTED WHO ARE MEMBERS OF THIS COMMUNITY WHO ARE FEELING LEFT BEHIND. AND I THINK WHAT YOU SAID CAN VERY MUCH RELATE TO THAT. 10 YEARS AGO, ADVOCACY WAS DOMINATED BY PARENS AND INDIVIDUALS WITH AUTISM FELT LACK OF REPRESENTATION THAT THEIR NEEDS WERE NOT BEING TAKEN INTO ACCOUNT. NOW THE BEND LUMHAS SWUNG THE OTHER WAY AND PARENTS ARE FEELING -- PENDULUM -- FEELING THAT THE FOCUS HAS BEEN ON AREAS THAT THEIR CHILDREN ARE NOT REALLY ABLE TO ACCESS IT'S VERY DIFFICULT TO APPRECIATE A PANEL ON EMPLOYMENT WHEN YOU'RE FOCUSED ON SAFETY AND PREVENTING INJURY. SO, I THINK THAT -- AND SAMANTHA TO YOUR POINT, I THINK WE ALL CAN AGREE THAT YOUR GROUP REPRESENTS INDIVIDUALS WITH AUTISM AT ALL LEVELS. INCLUDING SERIOUSLY AFFECTED PEOPLE. OUR ORGANIZATION ALSO REPRESENTS VERY HIGH FUNCTIONING SELF ADVOCATES WHO ARE INTO RESEARCH AND CAUSATION. I'M NOT -- WE DON'T REALLY REPRESENT THE VIEWS OF THE NEURODIVERSITY COMMUNITY. SO I THINK WHAT ALL THIS COMMENTARY AND DISCUSSION OVER THE LAST TWO MEETINGS IS REALLY POINTING TO IS THE NEED FOR BALANCE. AND AGAIN, JOHN, YOU SAID IT WHEN YOU MADE YOUR COMMENT THAT THE NEEDS ARE VERY DIFFERENT. AND I THINK THAT IS WHY THERE IS A FRUSTRATION. WE JUST HAVE TO MAKE SURE THAT WE ARE NOT OVER REPRESENTING ONE GROUP'S SET OF NEEDS AT THE EXPENSE OF ANOTHER GROUP'S EQUALLY IMPORTANT SET OF NEEDS. >> JOHN: I AGREE. WE ALSO JUST HAVE TO BE CONSCIOUS THAT OUR ABSOLUTE NUMBERS ARE SMALL. THERE IS YOU, THE PARENT. I'M A PARENT. THERE IS SAM WHO IS AN AUTISTIC PERSON AND NOT YET A PARENT. WE DON'T HAVE ENOUGH INDIVIDUALS. I AGREE WITH YOU, THOUGH, THAT WE NEED MORE DIVERSITY AND I SUPPORT THAT. AND I WOULD ALSO SAY THAT AS MUCH AS SOME OF THESE COMMENTS SOUND CONTENTIOUS AND ANGRY AND SOMETIMES I RESPOND THAT WAY TOO. YOU KNOW WE HAVE DONE THIS FOR MANY YEARS AND WE HAVE ALWAYS GOTTEN ALONG AND I LIKE YOU AND LEN AND THE OTHER PARENTS NA HAVE BEEN PARTS OF THE COMMITTEE AND SO WHEN WE GET-TOGETHER, WE ARE NOT EACH OTHER'S ENEMIES AND WE CAN MOVE FORWARD TO DO THINGS. I WISH WE COULD DO THAT BETTER HERE. >> I WANT TO -- I HAVE A COUPLE OF COMMENTS TO MAKE BECAUSE I ALSO FOUND SHANNON'S COMMENTS REALLY INTERESTING AND IMPORTANT AND I WILL FULLY DISCLOSE THAT SHANNON TALKED TO ME ABOUT HER COMMENTS BEFORE SHE SUBMITTED THEM. AND I THINK OF SHANNON AS A FRIEND OF MINE. HER SON IS SOMEONE WITH PRETTY HIGH SUPPORT NEEDS. HER SON IS NON-SPEAKING. AND SHANNON IS ALSO PART OF THE NEURODIVERSITY ADVOCACY COMMUNITY. SO I WANTED TO HIGHLIGHT JUST THAT FACT THAT AGAIN, WE'RE DIVERSE. AND HER CONCERNS REALLY DO COME DOWN TO CHOICE AS JOHN POINTED OUT. AND SOMETIMES WHEN WE TALK ABOUT CHOICE, WE MAKE ASSUMPTIONS ABOUT THAT. THAT THE CHOICE IS ALWAYS GOING TO BE THIS OR THAT. THE CHOICE THAT SHANNON ITS WANTS TO MAKE IS FOR INTEGRATION FOR HER SON AND SHE IS VERY CONCERNED SHE WILL NOT BE ABLE TO FIND AN INTEGRATED COMMUNITY SETTING. ONE OF THE REASONS WHY MANY OF US ARE CONCERNED ABOUT CHOICE IS THAT WHAT WE ARE NOT -- ASAN HAS NEVER REALLY TAKEN A POSITION ON, WE DON'T HAVE MUCH OF A -- WE DON'T REALLY HAVE MANY CONCERNS ABOUT A SITUATION WHERE PEOPLE JUST SORT OF DECIDE OKAY WE ARE ALL FRIENDS, WE ARE GOING TO RENT A HOUSE TOGETHER. WHAT WE DO SEE AND WE TEND TO BE A BIT MORE CONCERNED ABOUT, IS WHEN SOMEONE BUILDS A HOUSE THAT CAN ONLY BE OCCUPIED BY SIX AUTISTIC PEOPLE, AND THEN THEY HAVE TO FIND THOSE PEOPLE TO FILL THE HOUSE. AND WHEN WE HAVE HOUSING PLANNING WHERE YOU CREATE A SETTING AND THEN FILL IT, YOU'RE MAKING PEOPLE'S CHOICES BEFORE THEY'VE MADE IT, ESSENTIALLY. YOU'RE SAYING, WE KNOW THAT PEOPLE ARE DEFINITELY GOING TO WANT THIS AND THEN WE ARE GOING TO FILL THIS SETTING. THAT'S NOT ALWAYS TRUE AND SO WHEN YOU HAVE A SITUATION WHERE YOU HAVE CREATED -- AND WITH SIX BEDS, YOU MIGHT BE MORE LIKELY TO FIND SIX PEOPLE WHO WANT IT. WHEN YOU CREATE A SETTING WITH LET'S SAY 50 BEDS, OR 100 BEDS, YOU'RE REALLY MAKING A GAM THEY'LL YOU'RE GOING TO FIND 100 PEOPLE WHO TRULY THAT IS THEIR TOP CHOICE. AND THAT'S OFTEN NOT ACTUALLY SOMETHING THAT HAPPENS. AND THEN YOU HAVE TO ESSENTIALLY FILL BEDS WITH PEOPLE FOR WHOM THAT WOULDN'T BE THEIR TOP CHOICE. THAT IS WHY WE WANT TO MAKE SURE THAT HOUSING POLICY IS AS FLEXIBLE AS POSSIBLE SO THAT PEOPLE CAN MAKE THE DECISION, WHAT KIND OF -- [ MICROPHONE FEEDBACK ] PEOPLE CAN SAY, SHEAR WHERE I WANT TO LIVE AND THEN BRING THEIR SERVICES IN WITH THEM. I ALSO WANT TO BRIEFLY ADDRESS JONATHAN MITCHELL'S COMMENT BECAUSE I WAS CALLED OUT RATHER SPECIFICALLY IN THAT COMMENT. MITCHELL IS NOT A PARENT, HAS REPEATED REQUESTS THAT HE MADE BOTH OUTSIDE THIS MEETING AND DIRECTLY TO JOSHUA GORDON, THAT I DISCLOSE MY MEDICAL RECORDS AS A CONDITION OF SERVING ON THE IACC. AND I'M GOING REPEAT WHAT I HAVE ALREADY SAID BECAUSE I WANT IT TOM COMPLETELY CLEAR ON THE PUBLIC RECORD, I'M NOT HERE TO REPRESENT MYSELF. AS MY COLLEAGUES ON IACC KNOW, I HAVE CONSISTENTLY ADVOCATED FOR GREATER RESEARCH ON COMMUNICATION SUPPORTS, ON SEIZURES, ON CROSS-CULTURAL AND COST-RACIAL DIFFERENCES, IN IDENTIFICATION AND DELIVERING SUPPORTS, ON A VARIETY OF MEDICAL CO-OCCURRING CONDITIONS THAT I DON'T NECESSARILY HAVE, AND I HAVE BEEN DOING THAT NOT BECAUSE OF MY OWN PERSONAL MEDICAL HISTORY, BUT BECAUSE THESE ARE THE ISSUES THAT HAVE BEEN RAISED TO ME BY MY MEMBERSHIP, BY ASN'S MEMBERSHIP, NOT MY PERSONAL MEMBERSHIP. BUT MY ORGANIZATION'S MEMBERSHIP. I WAS NOT APPOINTED BASED SOLELY ON MY AUTISM DIAGNOSIS. I WAS APPOINTED BASED ON MY POSITION AT THE AUTISTIC SELF ADVOCACY NETWORK, A NATIONWIDE 501C3. ALISON IS HERE AS A REPRESENTATIVE OF THE AUTISM SCIENCE FOUNDATION. I'M HERE BASED ON MY PROFESSIONAL POSITION AS WELL. AND I TAKE THAT VERY SERIOUSLY. AND I TAKE MY RESPONSIBILITY TO NOT SPEAK FOR MYSELF VERY SERIOUSLY. HOWEVER, THIS IS NOT AN ISOLATED INCIDENT. WE SELF ADVOCATES SEE THIS VERY OFTEN WHERE IF WE WANT TO TALK BASED ON OUR PROFESSIONAL CREDENTIALS, AND WE ALSO DISCLOSE THAT WE ARE AUTISTIC, WE ARE ASKED TO DISCLOSE PERSONAL INFORMATION THAT OTHERS ARE NOT ASKED TO DISCLOSE. AND THIS IS A SILENCING TECHNIQUE. AND IT IS A DOUBLE STANDARD THAT WE UNFORTUNATELY, HAVE TO FACE. PROFESSIONAL EXPERIENCES OR QUALIFICATIONS ARE EITHER IGNORED OR ACTIVELY USED AGAINST US AS WE SEE IN JONATHAN MITCHELL'S COMMENT. I HAVE NEVER PRETENDED THAT MY AUTISM DOESN'T AFFECT ME. I DO HAVE A PROFESSIONAL DIAGNOSIS, WHICH MANY ADULTS ON THE SPECTRUM DO NOT HAVE BECAUSE THEY ARE VERY DIFFICULT TO OBTAIN. AND THEY ARE EXPENSIVE TO OBTAIN. BUT THAT DIAGNOSIS INCLUDES EXTREMELY PERSONAL DETAILS ABOUT MY CHILDHOOD, MY LATER ADULTHOOD, MY INDEPENDENT LIVING SKILLS, MY PSYCHIATRIC HISTORY; AND I'M CHOOSING NOT DISCLOSE THEM. AND I WILL CONTINUE TO ADVOCATE FOR OUR MEMBERSHIP TO THE BEST OF MY ABILITY. THANK YOU. [ APPLAUSE ] >> DR. GORDON: THANK YOU, SAMANTHA. WE ARE RUNNING OVER. BUT I THINK GIVEN THE SPIRIT OF THE DISCUSSION I'M GOING TO ALLOW US TO CONTINUE TO RUN OVER BUT, WE'LL GET TO YOU, JOHN. THERE IS A COUPLE OF PEOPLE IN FRONT OF YOU. FIRST SUSAN WANTED TO SAY SOMETHING AND THEN ALISON AND THEN JOHN AND I HAVE GOT -- LET ME START TO WRITE THIS DOWN NOW. GO AHEAD SUSAN. >> SUSAN: I WANTED TO MAKE A CLARIFICATION ABOUT MEMBERSHIP. WE HAVE ALISON, A PARENT ON OUR COMMITTEE. WE HAVE JOHN AND SAMANTHA WHO ARE SELF ADVOCATES AND I WANTED TO POINT OUT THAT ED LIN AND A PARENT, 67 A PARENT AND MARCIE IS A PARENT. AND TWO MEMBERS WHO HAVE LEFT BUT WERE WITH US, AMY GOODMAN WAS A SELF-ADVOCATE AND HAS SINCE LEFT AND SHANNON WAS BOTH A SPOUSE AND A PARENT. SO I WANTED TO JUST MAKE SURE THAT PEOPLE WERE ACKNOWLEDGED. THERE ARE A LOT OF PEOPLE WITH DIFFERENT INTERESTS AND EXPERIENCES WITH THE AUTISM SPECTRUM AND WE WITH RESPECT THEM ALL. >> DR. GORDON: THANK YOU. ALISON? >> ALISON: I JUST WANTED TO RETO THE POINT ABOUT HOUSING, WHICH IS NOT THE EXPERIENCE I THINK OF. THE MAJORITY OF PARENTS LOOKING FOR ADULT PLACEMENT. THE WAITING LIST ARE YEARS LONG. WE HAVE CHILDREN MOVING OUT OF PEDIATRIC RESIDENTIAL PLACEMENT. THERE ARE NO PLACES FOR THEM TO GO. EVERYONE IS APPLYING FOR THESE SPOTS. VERY FEW PEOPLE GET THEM. I DON'T KNOW OF ANY GOOD RESIDENTIAL CENTERS FOR ADULTS THAT DON'T HAVE WAITING LIST MILES LONG, YEARS LONG. SO TO SAY THEY CAN'T BE FILLED IS JUST NOT THE EXPERIENCE IN THE FIELD. >> I WANT TO CLARIFY IT'S NOT THAT TAZE CAN'T BE FILLED IT'S THAT THERE ARE MULTIPLE PEOPLE WHO APPLY FOR THESE PLACEMENTS NOT JUST BECAUSE THEY NEED A PLACE TO GO, BUT ALSO BECAUSE EVEN IF THEY WOULD PREFER COMMUNITY-BASED SCATTERED-SITE HOUSING, THAT ABSOLUTELY DOESN'T EXIST. SO AS BETWEEN SOMETHIG THAT COMPLETELY 100% DOESN'T EXIST AND SOMETHING WITH A WAIT LIST, THEY ARE GOING TO GO FOR THE THING WITH THE WAIT LIST. AND THIS IS SOMETHING THAT WE HEAR FROM OUR MEMBERSHIP QUITE OFTEN. >> DR. GORDON: I THINK THIS IS A GREAT TOPIC FOR US TO CONSIDER IN THE HOUSING WORK GROUP. IT'S CLEAR THERE IS A SHORTAGE OF HOUSING. AND WHAT MODELS MIGHT BE BEST FOR THE FULL SPECTRUM OF THOSE SUFFERING FROM AUTISM IS SOMETHING THAT I THINK WE NEED TO WORK THROUGH. JOHN. >> JOHN: SO, SUSAN POINTS OUT, WE ACTUALLY HAVE MORE PARENT REPRESENTATION ON IACC THAN I THOUGHT. BUT I KNOW THAT TO BE SO. THAT STILL LEAVES THE IDEA THAT THERE IS AN ABSENCE OF REPRESENTATION FROM THE AUTISTIC COMMUNITY MEMBERS WHO HOLD SHARPLY DIFFERENT VIEWS ABOUT THEIR DISABILITY THAN PERHAPS SAM OR I. AND SHE TALKED ABOUT Mr. MITCHELL'S COMMENTARY ABOUT HER AND TO BE FAIR, HE HAS ALSO WRITTEN THE SAME THINGS ABOUT ME. HE HAS WRITTEN TO JOSH HERE SUGGESTING THAT I AND SAM SHOULD BE REMOVED FROM IACC BECAUSE OF OUR VIEWS. BUT YOU KNOW, I WENT AND I MET HIM IN PERSON THIS FALL. AND YOU KNOW, WHEN YOU SEE HIM IN PERSON, HE'S A KIND OF A WHIMSICAL, FUNNY, THOUGHTFUL GUY, WHOSE HAD A HARD LIFE. AND HE'S GOT SOMETHING TO OFFER THAT DOESN'T COME THROUGH IN SNAPPING AND BITING AT SAM AND ME. THERE ARE OTHER AUTISTIC PEOPLE WHO I SEE, WHEN I TRAVEL AND SPEAK, AND THEY SPEAK TO ME THROUGH ASSISTIVE DEVICES AND OTHER MEANS AND I REALIZED THOSE PEOPLE POTENTIALLY HAVE A GREAT DEAL TO CONTRIBUTE TO COMMITTEES LIKE OURS. AND IT'S HARD FOR ME TO IMAGINE HOW THEY WOULD PARTICIPATE IN IACC AS IT IS STRUCTURED RIGHT NOW JUST AFTER LUNCH TODAY -- ONE OF THE FOLKS SITTING HERE IN OUR AUDIENCE COMMENTED TO ME ABOUT HOW HARD IT WAS TO FOLLOW OUR PROCEEDINGS UP HERE BECAUSE WE DON'T HAVE A CLOSED CAPTIONING IN THE VIDEO STREAM. THERE IS A TIME LAG WITH THE TRANSCRIPTS SO YOU CAN'T READ IT. AND IF YOU HAVE, WHETHER AN AUTISTIC IMPAIRMENT OR HEARING IMPAIRMENT, YOU CAN'T KEEP TRACK OF WHAT WE ARE SAYING. AND I THINK IT MERITS SOME CONSIDERATION. HOW COULD WE ACCOMMODATE THOSE DIFFERENT VIEWS AND HOW COULD WE WELCOME THEM HERE? CERTAINLY I DON'T WANT WANT TO ENCOURAGE PEOPLE TO COME AND SNAP AT SAM AND ME OR THE REST OF US. BUT AT THE SAME TIME, I DO ENCOURAGE DIFFERENT OPINIONS AND I THINK THAT THERE IS PEOPLE THAT MAYBE SAY AND DO THINGS IN A WAY THAT CAUSES TO TURN AWAY FROM THEM, AND WE DON'T HEAR A VALUABLE MENTIONAGE. AND I WISH WE COULD THINK MORE OF THAT -- A VALUABLE MESSAGE. >> DR. GORDON: I WAS ASKING SUSAN TO CLARIFY THAT ALTHOUGH THE LIVE VIDEO PROCEEDINGS ARE NOT CLOSED-CAPTIONED, THAT IS SOMETHING THAT WE CAN LOOK INTO, ALTHOUGH I SUSPECT THE COST WILL BE QUITE HIGH. THE FEED IS CLOSED-CAPTIONED LIVE. SO PEOPLE WHO WATCH THE PROCEEDINGS LATER, I ENCOURAGE ANYONE INTERESTED TO DO SO, CAN WATCH THE PROCEEDINGS WITH CLOSED CAPTIONING. THAT'S THE WAY I UNDERSTAND IT, WHEN IT'S STORED ON THE WEBSITE. >> [ OFF MICROPHONE ] >> DR. GORDON: I APPRECIATE THE COMMENT SO LET ME JUST REPEAT IT. AUDIENCE MEMBER NOTED THAT THE REQUEST WAS TO PROVIDE LIVE CAPTIONING AND I THINK WE'LL LOOK INTO IT. WE DON'T HAVE A BUDGET FOR THIS COMMITTEE. SUSAN? >> I'LL ADD SOMETHING. SO IT ACTUALLY IS LIVE CAPTIONED IF YOU'RE WATCHING IT ON THE COMPUTER IT'S JUST NOT ON OUR SCREEN IN THE ROOM. SO WE CAN LOOK INTO WHETHER YOU CAN -- BUT THEN IF YOU'RE WATCHING ON THE SCREEN, YOU WOULD BE WATCHING WHAT THEY VIDEO OF US TALKING VERSUS WATCHING THE SLIDES THEMSELVES. >> DR. GORDON: WITH THIS -- THIS IS SOMETHING WE CAN ADDRESS. WE CAN FIND A WAY TO MAKE SURE THAT PEOPLE WHO ARE HERE IN THE ROOM HAVE A WAY OF ACCESSING THAT. WE WILL LOOK FORWARD TO THAT. >> [ OFF MICROPHONE ] >> DR. GORDON: WE'LL LOOK INTO THIS. THAT'S A VERY HELPFUL -- >> WE MIGHT BE ABLE TO, FOR EXAMPLE, RUN THE VIDEO CAST ON A DIFFERENT SCREEN FROM THE SLIDES OR SOMETHING LIKE THAT. >> JOHN: SHE EXPLAINED TO ME, SO YOU KNOW, THAT THE LIVE TRANSCRIPTION, IT IS DELAYED. SO IT WOULD PUT A PERSON IN THE POSITION OF LOOKING AT WORDS THAT ARE OUT OF SYNC WITH WHAT THEY HEAR IN THE ROOM. >> I DON'T THINK THAT CAN BE HELPED BECAUSE SOMEBODY HAS TO BE DOING THAT. AND THEY CAN'T DO IT AS IT IS HAPPENING. >> DR. GORDON: WE'LL LOOK INTO THE POSSIBILITY OF BRINGING THIS UP AT SUBSEQUENT MEETINGS. WHETHER WE CAN SET IT UP IN TIME FOR APRIL, I DON'T KNOW. DAVID YOU HAD A COMMENT? >> DAVID. TWO. THOUGHTS, ONE IS NO ONE SHOULD HAVE TO SHARE THEIR MEDICAL RECORDS TO BE PART OF THIS COMMITTEE. BUT I THINK WE SHOULD SHARE OUR SPOTIFY PLAY LIST. [ LAUGHS ] THE SECOND THOUGHT WAS I WANTED TO POINT OUT SOMETHING THAT WAS IN THE ASAN COMMENT THAT I THOUGHT WAS IMPORTANT WHEN THEY WERE TALKING ABOUT TRANSITION AND SAID IT'S NOT CLEAR THATEM PEOPLE WITH AUTISM NEED SEPARATE TRANSITION SERVICES FROM PEOPLE WITH OTHER DISABILITIES. WHICH I THINK IS A GREAT EMPIRICAL QUESTION. THAT WE OUGHT TO BE THINKING ABOUT ASKING IN A NUMBER OF ARENAS INCLUDING HOUSING AND PRIMARY CARE. INCLUDING IN-PATIENT CARE. THERE ARE PROBABLY OTHER GROUPS THAT HAVE BEEN WORKING ON THIS FOR LONGER THAN WE HAVE AND WORKED OUT SOME OF THE QUESTIONS THAT WE NEED TO WORK OUT AND I WONDER IN THE CONTEXT FOCUSING ON SPECIFIC ASPECTS OF HEALTH AND WELLNESS OR ON FOCUSED HOUSING OR OTHER AREAS WHETHER WE COULD SORT OF LIFT OUR HEADS UP FROM THE AUTISM WORLD AND SEE WHAT ELSE IS GOING ON AND SEE WHETHER THERE ARE EXACT MODELS OR ANALOGUES THAT COULD REALLY BE APPROPRIATE FOR US TO THINK ABOUT AS WE ADDRESS THIS QUESTION IN AUTISM. >> DAVID JUST TO REPLY TO THAT COMMENT. SO, I DID MENTION THAT WE ARE IN YOU TOUCH WITH THE FEDERAL PARTNERS IN TRANSITION THEY ARE VERY INTERESTED IN ENGAGING WITH IACC. SO IN THE FUTURE WORKSY MAY BE ABLE TO HAVE THEM COME HERE AND TALK TO US ABOUT THOSE VERY ISSUES. >> DAVID: I HOPE WE DO IT NOT JUST FOR TRANSITION. THAT WE MAY HAVE A LOT TO LEARN FROM INTELLECTUAL DISABILITY COMMUNITY OR THE COMMUNITY THAT HELPS PEOPLE WITH SERIOUS MENTAL ILLNESS. OR OTHER GROUPS ADDRESSING THESE SAME KIND OF ISSUES. >> SAMANTHA: I WANT TO ECHO THAT. HOUSING, FOR EXAMPLE, IS A PERFECT EXAMPLE WHERE PEOPLE WILL SAY WE CAN'T HAVE, BUT WITH SIGNIFICANT BEHAVIORS HOUSED IN THE COMMUNITY, SOMETHING THAT THE MENTAL HEALTH COMMUNITY AND THE INTELLECTUAL DISABILITY COMMUNITY HAS BEEN ADDRESSING FOR A LONG TIME NOW THROUGH SUPPORTIVE HOUSING MODELS AND MANY PEOPLE WITH PSYCHOSOCIAL DIAGNOSIS OR INTELLECTUAL DISABILITIES HAVE CHALLENGING BEHAVIORS THAT CAN INTERFERE WITH HOUSING AND HAVE PEOPLE RESULT IN PEOPLE BEING EXPELLED FROM HOUSING. SO PEOPLE HAVE ABSOLUTELY BEEN WORKING ON THIS QUESTION. WE NEED TO BE INTERACTING WITH THOSE FIELDS. >> DR. GORDON: A GREAT POINT. AND I THINK A NICE PLACE TO START THAT WILL BE WITH THE HOUSING WORK GROUP. WE CAN TRY TO ENSURE THAT WE HAVE REPRESENTATION THAT GOES BEYOND THE IACC AND AUTISM. OKAY. I THINK AT THIS POINT, WE SHOULD MOVE ON. WE ARE RUNNING A LITTLE BIT LATE BUT WE'LL BE ALL RIGHT. WE'LL MAKE UP THE TIME A LITTLE BIT LATER IN THE SCHEDULE. NEXT ON THE AGENDA IS A PANEL PRESENTATION ON AUTISM SCREENING. THIS IS AN ISSUE THAT THIS GROUP HAS DEALT WITH IN THE PAST FEW YEARS AND IN TERMS OF EARLY IDENTIFICATION OF INDIVIDUALS WHO ARE AT RISK OR WHO GO ON TO RECEIVE AN AUTISM DIAGNOSIS. HOW TO DO IT AND WHAT TO DO ONCE ITS BEEN DONE. IT'S AN AREA OF ACTIVE RESEARCH AT N EMR AND ACTIVE CONCERNS AT -- SORRY NOT JUST NIMH, NIH GENERALLY AND ACTIVE CONCERNS THROUGH THE FEDERAL PARTNERS AS WELL AS MANY OF YOU FROM THE NON FEDERAL REPRESENT LIVES RECOGNIZE THIS AS AN IMPORTANT ENDEAVOR. TO START US OFF, WE HAVE FOUR PANELISTS AND THE FIRST IS DENISE PINTELLO, THE CHIEF OF CHILD ADOLESCENT RESEARCH PROGRAM AT NIMH AND IS GOING TO START US OFF BY INTRODUCING THE NETWORKS THAT NIH PUT TOGETHER TO STUDY THESE ISSUES. >> THANK YOU, JOSH. GOOD AFTERNOON IT'S ALWAYS WONDERFUL TO BE HERE. I HAVE TO SAY, I ENJOY LEARNING AND HEARING ALL THE FEEDBACK. MY NAME IS DENISE PINTELLO, I WORK AT THE NATIONAL INSTITUTE OF MENTAL HEALTH AND I'M HERE WITH RESEARCHERS ON WHO COMPOSE OUR ASDP NETWORK. I WANTED TO IN THE NEXT FEW MINUTES TO DISCUSS WHAT THE NETWORK IS AND TELL YOU WE HAVE FIVE SEPARATE STUDIES THAT NIH FUNDED CENTERING AROUND THE SCIENTIFIC WORK OF VERY DEDICATEDDED AND THOUGHTFUL SCIENTISTS THAT ARE REALLY DEVOTED TO FINDING NEW APPROACHES TO ENHANCE EARLY DETECTION, ENGAGEMENT AND REFERRAL TO TREATMENT FOR AUTISM, FOR VERY YOUNG KIDS. BEFORE I DESCRIBE THE NETWORK IS, I THOUGHT IT WOULD BE HELPFUL TO GIVE YOU AN IDEA OF HOW THE NETWORK CAME ABOUT. AND THE ANSWER IS YOU, THIS BODY AS A RESULT OF THE 2013 STRATEGIC PLAN. THAT PLAN IDENTIFIED THE IMPORTANT NEED TO ADDRESS SERVICES FOR YOUNG KIDS TRANSITION AGE YOUTH AND ADULTS. AND LOOKING AT THE TRYING TO ADDRESS SERVICES UTILIZATION AS A RESULT OF THE STRATEGIC PLAN, MY COLLEAGUE AT NIMH, AND BEVERLY, WROTE A SERIES OF THREE DIFFERENT FUNDING OPPORTUNITIES THAT WAS TITLED, ASD, ACROSS THE LIFESPAN. SO IT FOCUSED ON VERY YOUNG KIDS, TRANSITION AGE YOUTH AND ADULTS. YOU ALSO MIGHT RECALL THAT IN THAT STRATEGIC PLAN, THE IACC PREPARED IN 2013, IT WAS FRAMED AROUND A SERIES OF DIFFERENT QUESTIONS AND THE FIRST QUESTION WAS WHEN SHOULD I BE CONCERNED? AND ONE OF THOSE FOAs, THE NIMH DEVELOPED FOCUSED ON THIS AREA AND THE IMPORTANCE OF EARLY IDENTIFICATION SO PARENTS HAVE SOME INFORMATION SO THAT THEY HAVE A SENSE OF WHAT MIGHT THEY DO AND HOW TO STAY ENGAGED AND WORK WITH BEING REFERRED TO TREATMENT. SO, THIS FOA, FUNDING OPPORTUNITY ANNOUNCEMENT, THESE WERE THE GENERAL GOALS OF THAT FUNDING OPPORTUNITY ANNOUNCEMENT YOU ABOUT THE MOST IMPORTANT THING THAT WE REALLY EMPHASIZED WAS ITS FOCUS ON UNDER SERVED POPULATIONS, TODDLERS, FAMILIES AND COMMUNITIES. AND THAT WAS THE CENTRAL TENANT OF THOSE FUNDING OPPORTUNITY ANNOUNCEMENT. THE WONDERFUL THING IS, WE RECEIVED A NUMBER OF FANTASTIC APPLICATIONS. UNFORTUNATELY WE COULD ONLY FUND THE TOP 5. SO LET ME GIVE YOU A SNAPSHOT OF WHAT THOSE APPLICATIONS LOOK LIKE THAT WE SELECTED. AND HERE ARE THE LOCATIONS GEOGRAPHICALLY AROUND THE COUNTRY. AND THERE WERE FIVE OF THEM AND THEY SPAN NINE STATES AND WERE BEING CONDUCTED IN 16 DIFFERENT LOCATIONS. SO LET ME JUST TELL YOU QUICKLY ABOUT THE FIRST APPLICATION. KARIN PIERCE, SHE IS AT CALIFORNIA SAN DIEGO AND SHE IS USING THAT WELL BABY CHECKUP, THAT 12 MONTHS, AND SHE IS IMPLEMENTING A SCREEN IN SAN DIEGO AND IN PHOENIX AND FROM THERE, THE UNIVERSAL SCREEN WOULD HAPPEN AT 12 MONTHS, 18 MONTHS, AND 24 MONTHS IT'S A TRIPLE SCREEN. AND HER GOAL IS TO DETECT EARLY SIGNS OF AUTISM AND REFER RIGHT AWAY ASD TREATMENT. THE SECOND STUDY UP IN WASHINGTON STATE, IT'S A RURAL STUDY FOCUSING ON A VERY DIFFERENT SCREEN REFERRAL TREATMENT MODEL FOCUSING ON KIDS AROUND THE AGE OF 18 MONTHS. AND THAT THOSE KIDS ARE IDENTIFIED AT BEING AT RISK. SHE IS TESTING A SPECIALIZED EVIDENCE TREATMENT TO BE DELIVERED BY 24 MONTHS. THE OTHER THREE RESEARCHERS YOU'RE GOING TO HEAR ABOUT LATER TODAY, EMILY FEINBERG IS CONDUCTING A COMPARATIVE EFFECTIVENESS TRIAL COMPARING FAMILY NAVIGATOR MODEL TO ROUTINE CARE MANAGEMENT MODEL. ALICE CARTER IS LOOKING AT SYSTEMIC INTERVENTIONS AND MANY OF YOU KNOW EI, EARLY INTERVENTION. SHE IS LOOKING AT VARIOUS APPROACHES AND THEN TO TRY TO ENHANCE ACCESS TO SERVICES ESPECIALLY AMONG UNDERSERVED TODDLERS. AND THEN AMY WETHERBY AND HER COLLEAGUES ARE CONDUCTING A MULTI-SITE TRIAL THAT IS TESTING A NUMBER OF DIFFERENT APPROACHES ESPECIALLY ON LINE AUTOMATED UNIVERSAL SCREENING TOOL AS WELL AS AN EVIDENCE-BASED TREATMENT TO ENHANCE ENGAGEMENT. SO THOSE WERE THE FIVE TOP APPLICATIONS THAT WE WANTED TO FUND. BUT BEFORE WE ACTUALLY FUNDED THEM, ONE OF THE THINGS THAT WE ALWAYS LOOK AT, BECAUSE THERE WERE FIVE SEPARATE STUDIES. WE LOOKED AT THE DIFFERENCES. THEY HAD DIFFERENT RESEARCH DESIGNS, DIFFERENT SCREENING INSTRUMENTS AND DIFFERENT APPROACHES AND STRATEGIES AND THEY WERE USING TO ENGAGE THESE FAMILIES AND OF COURSE DIFFERENT SETTINGS. BUT WHEN YOU LOOKED AT THEM AS A SET, WE THOUGHT THERE IS A LOT OF POTENTIAL HERE AND COLLECTIVELY OF THE FIVE STUDIES TOGETHER, THEY WERE GOING TO SCREEN 70,000 KIDS. AND IF YOU USE THE CDC ESTIMATES, THEY WOULD PROBABLY WE WOULD FIND THAT ABOUT 1000 OF THOSE CHILDREN WOULD BE DIAGNOSED WITH AUTISM. SO, WE REALLY TRY TO COME UP WITH WAYS, HOW TO CREATE AND HARNESS THE SCIENCE IN FIVE STUDIES? SO WHAT WE DECIDED TO DO WAS INVITE THESE APPLICANTS WHO WERE NOW BECOMING OUR GRANTEES, TO JOIN AND FORM A NETWORK. AND THE WONDERFUL THING IS THAT THEY SAID YES AND THEY AGREED TO ALSO INCLUDE FOUR COMMON MEASURES IN THEIR SCREENING PROTOCOLS AND AS A RESULT, THIS PROVIDES THE OPPORTUNITY TO COLLECTIVELY POOL DATA AT VARIOUS TIME POINTS TO, SEE IF WE HAVE MORE STATISTICAL POWER TOGETHER TO TRY TO FIND SOME PATTERNS AND TRENDS. SO, WE FUNDED THEM IN 2014, SINCE THEY WERE AWARDED, THEY ARE DOING A LOT OF DIFFERENT THINGS, MEETING ROUTINELY AND DEVELOPED A WEBSITE SHARE INSTRUMENTS, INCLUDING TRANSLATED INSTRUMENTS FROM DIFFERENT LANGUAGES, TREATMENT TRACKING MATRIX, DIFFERENT PUBLICATIONS. THEY ARE DOING TRAINING EACH OTHER STAFF AND VARIOUS IMPLEMENTATION PROCEDURES. AND WILL THEY ARE PRESENTING AT CONFERENCES. THE OTHER THING THAT OCCURRED SINCE 2014 THAT WAS UNEXPECTED THAT MANY OF YOU ARE AWARE OF, IS THE UNITED STATES PREVENTIVE SERVICE TASK FORCE RECOMMENDATION WHICH CONCLUDED THAT THERE WAS INSUFFICIENT EVIDENCE TO SUPPORT ROUTINE SCREENING WHEN PARENTS OR PROVIDERS DID NOT INDICATE ANY CONCERN. AND IN RESPONSE TO THAT FINDING, JAMA IMMEDIATELY RELEASED A EDITORIAL WHERE THEY ACKNOWLEDGED THAT THE ASD PEDS NETWORK, WHAT WE CALL IT BY THE WAY. I'M SORRY, I I DIDN'T SPELL OUT PEDIATRIC EARLY DETECTION ENGAGEMENT SERVICES NETWORK. THAT'S WHY IT IS PIECED. THAT PEDES. HAS THE POTENTIAL TO ADDRESS A NUMBER OF RESEARCH GAPS INCLUDING THE AREAS THAT WERE RAISED IN THE TASK FORCE RECOMMENDATION. SO, CURRENTLY WE ARE NOW STARTING YEAR 4 OF THE 5-YEAR PROJECTS. THEY ARE PLANNING TO BE DONE NEXT YEAR. AND THEY ARE AT THE HEIGHT NOW OF THEIR RECRUITMENT AND DATA COLLECTION PROCESSES AND THEY HAVE JUST SUBMITTED, I BELIEVE A JOINT PUBLICATION JUST ACCEPTED. SO WE ARE LOOKING FORWARD TO THAT. AND THE OTHER THING IS THAT WE ARE CONVENING MONTHLY AND IN PERSON MEETINGS. AND THEY ARE ADDRESSING A NUMBER OF DIFFERENT AREAS THAT HOPEFULLY WILL MOVE THE SCIENCE FORWARD. THESE STUDIES HAVE BEEN COMPLETED IN THE FALL OF 2019 AND THESE ARE SOME POTENTIAL ACTIVITIES THAT ARE ON OUR LIST TO BE ADDRESSED BY OR BEFORE THEN, INCLUDING, WE'D LOVE TO SEE THE IACC WOULD LIKE TO HAVE ALL FIVE REACHERS COME AND PRESENT THEIR FINDINGS ONCE THEY ARE COMPLETED BECAUSE WE WOULD LOVE TO HEAR YOUR THOUGHTS ABOUT YOUR IMPRESSIONS AS WELL. AND THEN THE OTHER THING THEY DO WANT TO IN CLOSING, WHAT I'D LIKE TO SAY IS THAT IT IS OUR HOPE THAT THESE SETS OF STUDIES THAT THIS NETWORK, CAN F WE FIND THESE MODELS AND STRATEGIES TO BE EFFECTIVE, WE WOULD HOPE THAT WE CAN DISSEMINATE THESE AND GENERATE ADDITIONAL UTILIZATION ACROSS THE COUNTRY OF WHAT THESE RESEARCHERS ARE DOING SO WE CAN MAKE A DIFFERENCE IN THE LIVES OF KIDS, FAMILIES AND COMMUNITIES. BECAUSE THAT'S WHY WE ARE DOING WHAT WE ARE DOING. SO, IT IS MY PLEASURE TO INTRODUCE TO YOU THREE OF THE FIVE RESEARCHERS FROM THIS STUDY. FIRST UP WILL BE AMY WETHERBY. AND SHE IS FROM FLORIDA STATE UNIVERSITY AND SHE IS MOBILIZING COMMUNITY SYSTEMS TO ENGAGE FAMILIES IN EARLY ASD DETECTION AND SERVICES. FOLLOWING AMY WILL BE ALICE CARTER. UNIVERSITY OF MASSACHUSETTS AT BOSTON. AND SHE IS GOING TO BE TALKING ABOUTESS DRAING SYSTEMIC HEALTH DISPARITIES IN EARLY AUTISM. AND THE LAST BUT NOT LEAST, IS EMILY FEINBERG FROM BOSTON UNIVERSITY. AND SHE GOING TO BE TALKING ABOUT EARLY IDENTIFICATION AND SERVICE LINKAGE FOR URBAN CHILDREN WITH AUTISM. IT IS OUR HOPE THAT YOUR - THAT WE INVITE AFTER THE PRESENTATIONS, WE WOULD LOVE TO HEAR YOUR IMPRESSIONS AND QUESTIONS AND ANY RECOMMENDATIONS YOU HAVE ABOUT HOW THIS NETWORK AS WELL AS OTHER AREAS OF FUTURE AREAS, THAT WE COULD WORK ON FOR FUTURE RESEARCH STUDIES. THANK YOU. [ APPLAUSE ] >> PLEASE BEAR WITH US FOR A MOMENT. I'M THRILLED TO BE HERE AND LEAD OFF THIS PANEL. IT'S A BUILT OF A SHIFT OF TOPIC FROM YOUR EARLIER DISCUSSION BUT YET INTIMATELY RELATED BECAUSE THE HOPE IS IF WE DO BETTER AT EARLY DETECTION, THEN THAT WILL TRANSLATE INTO BETTER DEVELOPMENTAL TRAJECTORIES AND BETTER OUTCOMES IN ADULTHOOD. THAT'S WHAT IT IS ALL ABOUT. AND I WANTED TO FRAME IT TO BEGIN WITH THE COST BUT THE COST IS ONLY A PART OF IT BECAUSE AUTISM IMPACTS FAMILIES AND INDIVIDUALS ON THE SPECTRUM VERY MUCH T EFFECTS THEIR WHOLE LIFE. BUT THE COST IS A BIG ONE JUST TO THINK ABOUT THE POTENTIAL SAVING T IS ONE OF THE MOST EXPENSIVE DEVELOPMENTAL DISABILITIES, LIFETIME COSTS FOR ONE CHILD RANGING 1.4 TO 2.4 MILLION DOLLARS. AND MOST OR MUCH OF THIS COST COMES IN ADULTHOOD. IF WE CAN DO BETTER EARLIER WE CAN SAVE A LOT OF MONEY LATER. YOU'RE AWARE THE MANNER ECONOMY OF PEDIATRICS RECOMMENDS DEPARTMENTAL SURVEILLANCE FROM 9-30 MONTHS EVERY WELL VISIT FOR DEVELOPMENTAL DISABILITIES IN GENERAL AND AUTISM SPECTACLE AVENUE BETWEEN 18-24 MONTHS. THE PROBLEM IS WE ARE ABLE TO DIAGNOSIS AUTISM BETWEEN 18-24 MONTHS, THE LOGIC OF SCREENING THAT THE AGE, YET THE MEDIAN AGE OF DIAGNOSIS IN OUR COUNTRY CONTINUES TO HOVER BETWEEN 4 AND 5 YEARS AND MINORITIES ARE DIAGNOSED AS A YEAR, YEAR AND A HALF LATER IT'S A HEALTH DISPARITY WHICH MAY PREVENT THE OPPORTUNITY TO GET EARLY INTERVENTION. AND THEN AS MENTIONED BY DENNY, THIS U.S. PREVENTIVE SERVICES TASK FORCE REPORT MADE THINGS A BIT WORSE. SO WE ARE NOT DOING SO WITH A GOOD GUIDELINES AND RECOMMENDATIONS AND NOW THEY ARE SAYING THE CONCLUSION IS THERE IS INSUFFICIENT EVIDENCE TO BE DOING THIS AND FURTHERMORE WE SHOULD WAIT FOR PARENTS TO BE CONCERNED. SO WHAT I'D LIKE TO DO TODAY IS BEGIN BY TALKING A LITTLE BIT ABOUT THE LIMITATIONS OF CURRENT SCREENING MEASURES. SCREENING TOOLS, SCREENING STRATEGIES. AND THEN TALK ABOUT WHAT WE ARE TRYING TO DO TO CHANGE, TRANSFORM HEALTH CARE DELIVERY FOR CHILDREN WITH AUTISM AND THEN ROLE THIS OUT AND POTENTIALLY SCALE UP. SO THE FIRST POINT I WANT TO MAKE IS THE SELECTION BIAS FROM SCREENING TOOLS WHEN YOU LOOK AT RESEARCH STUDIES THAT ARE PUBLISHED, OFTEN THE SENSITIVITY AND SPECIFICITY IS VERY MUCH INFLATED. AND PART OF THAT IS TO LOOK AT THE SAMPLE THEY COLLECTED AND THE DEVELOPMENTAL LEVEL. IF THE DEVELOPMENTAL LEVEL IS FAR BELOW 75, THEN THERE IS INFLATION. AND SO WHAT THAT IS THE SENSITIVITY SPECIFICITY AREN'T ACCURATE TO REPRESENT THE FULL SPECTRUM. WE KNOW AT LEAST 60% OF INDIVIDUALS ON THE SPECTRUM HAVE AN IQ WITHIN NORMAL LIMITS. SO THINKING ABOUT TRYING TO SCREEN FOR THE FULL SPECTRUM, IF THE DEVELOPMENTAL LEVEL FAR BELOW 75, WE ARE NOT DOING TOO GOOD. THE TOP LINE SHOWS THE YOUNGER SIB STUDY AS A REFERENCE AND SO WE SEE AVERAGE DEVELOPMENTAL LEVEL ON THE FOUR DOMAINS OF THE MULL UNSCALES AT 75 OR BUFF. IF WE LOOK AT THE LARGEST STUDIES M CHAT IN PRIMARY CARE, WE SEE A HUGE GAP. SO, IN OTHER WORDS, WHAT THIS IS SHOWING US IS THIS SCREENING MEASURE, ALTHOUGH THE SENSITIVITY AND SPECIFICITY LOOK ACCEPTABLE IN THIS PUBLICATION, IT IS MISSING MANY CHILDREN WHO HAVE HIGHER DEVELOPMENTAL LEVELS. AND JUST TO CONTRAST TO SHOW YOU THE FEASIBILITY OF CATCHING HIGHER FUNCTIONING CHILDREN EARLIER, WE HAVE A NEW SCREENING TOOL I'M GOING TO TALK ABOUT, AND FROM OUR ONGOING RESEARCH, WE ARE FINDING DEVELOPMENTAL LEVELS FAR CLOSER TO THE BABY SIBS, WHICH IS OUR TARGET. THE SECOND POINT IS THAT WE NEED TO THINK ABOUT HOW MANY CHILDREN ARE POSSIBLY BEING MISSED IN A PRIMARY CARE SCREENING TO REALLY UNDERSTAND WHO ARE THE FAULTS FALSE NEGATIVES. WHO ARE WE SAYING YOU PASSED. YOUR CHILD ISN'T AT RISK BUT THEY END UP HAVING AUTISM? SO WE KNOW FROM THE ONE-68 CHILDREN, THE CURRENT PREVALENCE ESTIMATES BASED ON THE CDC, THAT WOULD TRANSLATE TO ABOUT 15 PER 1000. SO IF WE TAKE THE SCREENING TOOLS THAT HAVE BEEN USED IN PRIMARY CARE AND JUST A COUPLE OF ARTICLES THAT ARE PUBLISHED STARTING WITH WAY BACK WITH THE CHAT, WHICH TAUGHT US A LOT, THEY WERE CATCHING TWO PER THOUSAND. THEY ACKNOWLEDGE, WE ARE MISSING FAR MORE THAN WE ARE CATCHING. THE M CHAT SLIGHTLY IMPROVED. THE RECENT STUDY OF SCREENING 18,000 IN PRIMARY CARE, THE DIFFERENCES THEY HAVE GONE A LITTLE OLDER FROM THE CHAT AT 18 MONTHS. THEY SCREENED FROM 16-30 MONTHS WITH AVERAGE OF 20 MONTHS. A LITTLE BIT EASIER TO CATCH CHILDREN WHEN THEY ARE OLDER. AND YET THEY ARE CATCHING 5 PER 1000. THAT MEANS THEY ARE MISSING 10 PER THOUSAND. THEY ARE MISSING MORE THAN THEY ARE CATCHING. THAT IS A IMPORTANT MESSAGE. THE WIDELY USED SCREENING TOOL, PERHAPS ONE OF THE BEST AVAILABLE BUT IT'S NOT DOING THAT WELL. THE M CHAT AND THE STUDY IN EUROPE RIGHT AT 18 MONTHS, 52,000 CHILDREN WITHOUT THE FOLLOW-UP PHONE INTERVIEW, WHICH IS NECESSARY TO IMPROVE ACCURACY ACCURACY, ONE PER THOUSAND. THE ESAT IN EUROPE CONDUCTED EARLIER, LESS THAN ONE PER THOUSAND. SO OUR TOOLS ARE PART OF THE PROBLEM. WE HAVE TO ACKNOWLEDGE THAT. AND I WANT TO REPORT ON, WE REPORTED A FEW YEARS AGO A STUDY WITH CHECK LIST WHICH KARIN PIERCE IS ALSO USING AMOUNT TOOL THAT I DEVELOPED. IT'S A SOCIAL COMMUNICATIONS SCREENER. AND SO WE WERE THE FIRST TO USE IT AND WE FOUND IN OUR SAMPLE OF 6000 CHILDREN, WE IDENTIFIED 90 CHILDREN WHICH IS RIGHT AROUND 15 PER THOUSAND AND I'M CONFIDENT WE MISSED SOME. SO THIS IS MORE PROMISING APPROACH TO START WHAT WE DID IS STARTED WITH SCREENING FOR SOCIAL COMMUNICATION AND THEN WE SCREENED FOR AUTISM. THAT TWO-STEP PROCESS IS A BETTER APPROACH. AND I WANT TO ALSO COMMENT THAT THIS PROBLEM OF UNDER DETECTION IS NOT SPECIFIC TO AUTISM. WE ARE NOT DOING GOOD WITH OTHER DEVELOPMENTAL DISABILITIES BASED ON FIGURES OF THE U.S. DEPARTMENT OF ED, WE NOW SERVE AN AVERAGE OF 11% AT SCHOOL AGE IN SPECIAL EDUCATION. AT PRESCHOOL, WE ARE GETTING ABOUT HALF, FINDING ABOUT HALF. THAT'S NOT VERY GOOD. 5 DIVIDED BY 11. IF WE GO DOWN TO INFANTS AND TODDLERS, WE ARE CATCHING 2.5%. THAT MEANS WE ARE CATCHING 20%. IF YOU FLIP THAT, IT MEANS WE ARE MISSING 80%. AND I REFER TO THIS A LOT. SO IF YOU SCREEN IN THE EARLY INTERVENTION SYSTEM, YOU'RE STILL GOING TO MISS ABILITY% OF THE CHILDREN WITH AUTISM. EVEN IF YOU CATCH EVERY ONE OF THEM THAT IS REFERRED INTO THE SYSTEM. AND WE NEED TO DO BETTER FOR ALL DISABILITIES. PART OF THE PROBLEM IS WHERE WE DRAW THE LINE. SO MANY STATES HAVE ELIGIBILITY SET AT TWO STANDARD DEVIATION BELOW THE MEAN. THAT'S EQUIVALENT TO A STANDARD SCORE OR IQ SCORE OF 70. THAT'S THE SEABLITE PERCENTILE. -- SECT. MOST OF THE WIDELY USED SCREENING TOOL BROADBAND IS AGES AND STAGES AND MOST PEOPLE ARE USING THE SECOND PERCENTILE F YOU'RE CUT OFF IS AT THE SECOND PERCENTILE, YOU NEVER WILL GET MORE THAN 2%. PART OF OUR PROBLEM IS THE CUT OFF AND IT'S ALSO RELATED TO ELIGIBILITY. AND THE LAST POINT I WANT TO MAKE BROADLY IS THAT PART OF THE PROBLEM IS THE MILESTONES THAT ARE OUT THERE. SO THERE IS, MENS EFFORT BY THE CDC WHICH I APPLAUD TO LEARN THE SIGNS, ACT EARLY. STATES HAVE GOTTEN BEHIND THIS. BUT I REALLY WANT TO POINT OUT THAT THE MILESTONES THAT THEY ARE USING MAY BE PART OF THE PROBLEM. SO THESE ARE SAMPLE MILESTONES AND THEY NOW HAVE A NEW MILESTONE TRACK THEY'RE IS AN APP WHICH IS FABULOUS, BUT THESE ARE THE MILESTONES THEY ARE USING. SO AT 9 MONTHS, MAYBE AFRAID OF STRANGERS. THIS IS A SOCIAL -- ALSO HAPPENS TO BE AT 18 MONTHS. AND I TRIPLE CHECKED THIS. IT'S NOT A TYPO. SO AT 9 MONTHS, MAYBE AFRAID OF STRANGERS. MAYBE CLINGY. THINK ABOUT, ALL KIDS WITH AUTISM MIGHT PASS THIS AT 9 MONTHS. 12 MONTHS ARE SHY OR NERVOUS WITH STRANGERS. CRIES WHEN MOM OR DAD LEAVES. HAS FAVORITE THICK. MOST KIDS WITH AUTISM WILL HAVE FAVORITE THINGS THEY ARE OVERLY FIXATED ON. RIGHT? 18 MONTHS, LIKES TO HAND THINGS TO OTHERS AS PLAY. I'M PASSING AROUND A DOCUMENT FOR AT LEAST THE MEMBERS, 16 GENDERS BY 16 MONTHS. ONE OF THE EARLIEST GESTURE IS THE GIVE GESTURE. THIS COMES IN AT 9 MONTHS. THEY ARE AT THE SECOND PERCENTILE THESE MILESTONES. IS THAT WHAT WE WANT TO INFORM OUR FAMILIES OF? SO I THINK THAT IS PART OF THE PROBLEM. WE ARE TELLING FAMILIES MILESTONES THAT ARE VERY LOW AND SO FAMILIES CAN BE RELIEVED, MY CHILD CAN DO THAT. PARENT CONCERN IS NOT VERY ACCURATE BECAUSE THEY DON'T KNOW THE DEVELOPMENTAL MILESTONES. THEY DON'T KNOW WHEN TO BE CONCERNED. SO RETROSPECTIVE STUDIES AND PROSPECTIVE STUDIES OF PARENTS WITH CHILDREN WITH AUTISM, SHOW THAT BY TWO, ABOUT 75% OF PARENTS ARE CONCERNED IF THEIR CHILD ENDS UP WITH AUTISM. BY 18 MONTHS ABOUT HALF. BY 12 MONTHS ABOUT 30%. SO IF WE RELY ON PARENT CONCERN, WE LETTER NOT GO YOUNGER. FURTHERMORE, VERY FEW RESPOND TO REPORT CONCERNS THAT ARE SPECIFIC TO AUTISM. THEY HAVE MORE GENERAL CONCERNS LIKE THEIR CHILD IS NOT TALKING. THEIR CHILD HAS BEHAVIOR PROBLEMS. THEY DON'T KNOW THESE ARE PART OF AUTISM. SO THE PARENTS AREN'T GOING TO SAY, I'M CONCERNED ABOUT AUTISM. AND SO THE TASK FORCE REPORT IS VERY PROBLEMATIC IF WE ARE GOING TO RELY ON THAT. PARENTS ARE FAIRLY ACCURATE AT TELLING YOU WHAT THEIR CHILD CAN AND CAN'T DO. THIS IS FROM A STUDY WE REPORTED IN 2008 WHICH SHOWS OUR SCREENERS THE PURPLE BAR, HOW ACCURATE WE ARE AT CATCHING CHILDREN WHO END UP WITH AUTISM. THE YELLOW BAR IS THE PARENTS SAY THEY ARE CONCERNED OR NOT ABOUT ANYTHING. SO THE GAP BETWEEN THE YELLOW AND THE PURPOSE SELL WHO YOU'RE GOING TO MISS IF YOU'RE LOOKING FOR ANY CONCERN F YOU'RE LOOKING FOR AUTISM, THIS IS WHAT PERCENT ENT AT 18 TO 20 MONTHS OF PARENTS WHO HAD CONSIDERED, SAID YES I'M CONCERNED ABOUT AUTISM. SO WE ARE GOING TO MISS MOST OF THESE KIDS. WE CAN'T RELY ON PARENT CONCERN IF WE ARE GOING TO TRY TO GET UNDER 24 MONTHS. IF WE WANT TO KEEP THEM UNTIL 4 OR 5, THAT'S GOING TO WORK. NOT UNDER 24 MONTHS. SO WHAT I WANT TO SHARE WITH YOU IS STRATEGY THAT WE HAVE BEEN TESTING, THINGS HAVEN'T WORKED. WE LEARNED SO MUCH ABOUT THINGS THAT DON'T WORK. AND THAT THEY ARE IMPORTANT AND WHAT WE ARE TRYING THAT WE THINK IS GOING TO WORK. I STARTED THE FIRST WORDS PROJECT AT LEAST 15 YEARS. WE HAD FUNDING FROM THE MAJOR FEDERAL AGENCIES. I'M VERY APPRECIATIVE, MANY OF WHOM ARE AROUND THE TABLE. WHAT I WANT TO START WITH IS THE SMART ESACK, A NEW SCREENING TOOL. EARLY SCREENING FOR AUTISM AND COMMUNICATION DISORDERS. WE TOOK THE BEST QUESTIONS FROM THE INFANTILE CHECK LIST. I CAN DO THAT I'M THE AUTHOR. SO PLUS WE TWEAKED THEM AND WE ADDED QUESTIONS THAT WEREN'T THERE AND WE WHITTLED IT DOWN TO THE BEST 10 TO HAVE A BROADBAND SCREEN FOR COMMUNICATION DELAY AND THEN WE ADDED 20 MORE AUTISM-SPECIFIC QUESTIONS. SO THAT WE COULD DO THIS ALL AT ONCE. WE AUTOMATE TODAY WORKING WITH A RESEARCH COMPANY AND BUILT ON LINE AUTOMATED SYSTEM SO THAT PARENTS GET 10 QUESTIONS, THEY GET SCORED IMMEDIATELY, POSITIVE SCREEN, THEN THEY GET 20 MORE. SEAMLESSLY IT'S A LITTLE BIT LONGER. AND WE SCREEN FOR AUTISM RIGHT THEN AND THERE. AND WE HAVE FUNDING FROM NICHD NOW WHERE WE ARE VALIDATING DOWN TO 12 MONTHS. SO FAR SO GOOD. IT'S PROMISING FOR A UNIVERSAL SCREEN. THE BIGGEST CHALLENGE IS IT IS ELECTRONIC. IT'S NOT A PAPER VERSION. YOU HAVE TO DO IT ON LINE. WORKING PRETTY GOOD DOWN TO 12-36 MONTHS. GOOD SPECIFICITY IN THE HIGH 70s OR UPPER 80s FROM 12 UP TO 36 MONTHS. AND IT SEEMS TO BE COST EFFECTIVE. OUR QUESTION SYSTEM ARE A LITTLE BIT DIFFERENT THAN THE M CHAT IN THAT WE HAVE MORE QUESTIONS IN BOTH EQUALLY SPLIT ACROSS BOTH DOMAINS OF THE DSM5. WE HAVE A LITTLE BIT MORE QUESTIONS ON REPETITIVE RESTRICTIVE BEHAVIORS. SO NOW I WANT TO TURN TO, WHO SHOULD SCREEN AND HOW DO WE DO THIS? HOW DO WE MAKE THIS HAPPEN IN YOUR COMMUNITY? HOW DO WE MAKE THIS HAPPEN ACROSS OUR COUNTRY? AND POSSIBLY BEYOND TO GO GLOBAL? SO WE SEE IT AS WE HAVE TO HAVE WORKING TOGETHER THE EARLY INTERVENTION SYSTEM, BECAUSE THEY NEED TO BE READY. WE NEED TO AGREE WE ARE GOING TO DO NO HARM. I THINK WE AGREE ON THAT CONCEPT. THE SYSTEM NEEDS TO BE READY IF WE ARE GOING TO BE SCREENING PRIMARY CARE. KNOW WHO THESE KIDS ARE. PRIMARY CARE NEEDS TO BE READY TO DO THIS AND THE FAMILY IS AT THE HELM. THEY NEED TO BE READY TO HAVE THE SUPPORT. AND ULTIMATELY THE SERVICES. SO WHAT WE ARE DOING WITH OUR NEW FUNDING FROM NIMH AS PART OF THE ASDP NETWORK IS TRYING TO ROLL OUT A SET OF ON LINE TOOLS, COURSES AND RESOURCES WE HAVE DEVELOPED. WE GOT FUNDING FROM THE STATE OF FLORIDA TO DO THE DEVELOPMENT OF THE ON LINE TOOLS AND COURSES. AND SO WITH THIS GRANT, WE ARE ROLLING THEM OUT AND STUDYING THEM. WE HAVE A BIG TEAM ACROSS FOUR STATES. AND SO WHAT WE ARE DOING IN THIS GRANT ACROSS OUR SITES IN THE FOUR STATES IS TO REACH OUT TO CARE MEDICAL HOME, PUBLICLY FUNDED SOCIAL SERVICE SYSTEMS INCLUDING CHILD CARE, EARLY HEAD START, WIC AND WE ARE ALSO PARTNERING WITH THE NATIONAL BLACK CHURCH INITIATIVE TO REACH OUT THROUGH FAITH-BASED ORGANIZATIONS. WE STARTED THE PROJECT USING IMPLEMENTATION SCIENCE FRAMEWORK THE FIRST YEAR, WHICH I THINK DRAGGED INTO TWO YEARS, IN OUR PLANNING PHASE. AND WE WANTED TO IDENTIFY CHALLENGES AND BARRIERS FROM FAMILIES AND FROM PHYSICIANS AND NURSES, HEALTH CARE PROVIDERS. WE CONDUCTED FOCUS GROUPS WITH PROFESSIONALS ACROSS THREE STATES AND WHAT WE FOUND IS THAT THE PROFESSIONALS I INDICATED THEY NEED TRAINING ON AUTISM. THEY DON'T KNOW WHAT IT LOOKS LIKE AT 18-24 MONTHS. THEY ARE VERY COMFORTABLE TAKING A WAIT-AND-SEE APPROACH. THEY PREFER THAT. THEY ARE UNCOMFORTABLE NOT TAKING A WAIT-AND-SEE IT'S A BABY. THEY ARE NOT CONVINCED WE CAN IDENTIFY IT THAT EARLY. SO THEY DON'T WANT TO NEEDLESSLY WORRY PARENTS. THEY ARE VERY CONCERNED ABOUT AVAILABLE VALIDATED SCREENING TOOLS THAT ARE FEASIBLE IN PRIMARY CARE AND LASTLY THEY DO NOT WANT TO SCREEN UNLESS INTERVENTION IS AVAILABLE. AND THAT MEANS EVIDENCE-BASED AND NA MEANS AVAILABLE IN THEIR COMMUNITY. FAMILIES HAD OTHER MESSAGES THAT ARE IMPORTANT TO THINK ABOUT AND WE DID FOCUS GROUPS, WORKED VERY CLOSELY WITH THE NATIONAL BLACK CHURCH, LARGE, 75% OF OUR FAMILIES WERE AFRICAN-AMERICAN FROM INNER CITY NEW YORK, ATLANTA, PHILADELPHIA, AND WE HAD LARGE NUMBER OF HISPANIC FAMILIES IN FLORIDA. AND WHAT WE FOUND IS THERE ARE THREE THEMES. ONE IS TIMING. FAMILIES REALLY DON'T KNOW DEVELOPMENTAL MILESTONES. NOT SURPRISING. THEY DON'T EVEN KNOW WHAT A GESTURE IS MUCH LESS WHAT AUTISM IS. THEY DON'T UNDERSTAND THE SPECTRUM. THEY STILL THINK OF A RAIN MAN VERSION IF YOU PARDON MY REFERRING TO THAT AS AUTISM. SO THEY DON'T UNDERSTAND THE SUBTLE EASE OF BROADER SPECTRUM. THEY FEAR POWERLESSNESS LIKE STRUCTURAL VIOLENCE FROM THE WAIT AND SEE. BECAUSE THEY START TO SEE THE SIGNS AND THEN AS THEY RAISE IT TO THEIR PHYSICIAN, AND THEIR PHYSICIAN SAYING LET'S WAIT AND SEE. THEY FEEL POWERLESS AND THEN NOT ABLE TO GET THE DIAGNOSIS FOR A YEAR OR TWO. AND THEN RESISTANCE TO DIAGNOSIS. OTHER FAMILIES DON'T SEE IT WHY DO WE NEED TO DIAGNOSIS? LASTLY THEY ARE VERY EXPRESSING THE NEED TO SERVICE FOR BOTH DIAGNOSIS AND INTERVENTIONS. IF WE ARE GOING TO SCREEN, WE NEED TO BE ABLE TO OFFER SERVICES BOTH DIAGNOSIS AND INTERVENTION. WE DON'T WANT TO PUT FAMILIES ON A TWO YEAR WAIT LIST. THAT WILL DO HARM. SO WE ARE ROLLING OUT A SET OF TOOLS THAT I'M GOING TO SHARE WITH YOU IN THE TIME I HAVE LEFT. SO A SUMMARY OF WHERE WE ARE AT. AND THEN SEE HOW MUCH TIME I HAVE. SO WE RECRUITED CSP, COMMUNITY SERVICE PROVIDERSES FROM THESE THREE DIFFERENT TYPES OF SERVICE SYSTEMS. WE STARTED IN FLORIDA, GEORGIA AND PENNSYLVANIA AT A SMALLER& SCALE BECAUSE WE HIT MANY, MANY ROAD BLOCKS. THEN WE HAD TO FIGURE OUT A WORK AROUND. WE HAVE A BACKUP PLAN AND WORK AROUND. THEN WE FOLLOWED IMPLEMENTATION IN YEAR 3 AND MIAMI JUST SCREENED THE FIRST CHILD IN DECEMBER. SO WE BROUGHT MIAMI ON AND IT IS IN NEW YORK. SO NOW WE ARE SCALING UP. WE COUNTRY CRUITED 396CS. TOINATE FOUR STATES. 166 OF THEM ARE ACTIVELY SCREENING. SOME WILL BE. SOME HAVE FINISHED. WE SCREENED 25,000 NOW GOING AT A MUCH FASTER SPEED. WE HAVE A NICE DIVERSE SAMPLE. 43% RACIAL MINORITY AND 36% ETHNIC MINORITY. AND WE ARE FINDING ONCE THE CHILDREN ARE HAVING A POSITIVE SCREEN, WE INVITE THEM IN FOR EVALUATION. WE OFFER THEM EVALUATION. THEY DON'T HAVE TO WAIT FOR COMMUNITY SERVICE. I GET UP EVERY DAY AND I GO, IF THIS WAS EASY, IT WOULD BE DONE T IS HARD. AND I FEEL A LOT OF PRESSURE TO PULL THIS ALL OUT AND MAKE IT WORK. AND I AM NOT GOING TO GIVE UP UNTIL WE DO. BUT IT IS HARD AND THAT IS WHY IT'S NOT WORKING. IT REALLY REQUIRES A TRANSFORMATION OF A LOT OF THINGS WE ARE DOING. I LIKE TO USE THE METAPHOR OF A TRY CYCLE. WE NEED TO PROVIDE PROFESSIONAL DEVELOPMENT TO EARLY INTERVENTION SYSTEM, TO PRIMARY CARE. OFFER A USEFUL SCREENING TOOL AND THE FAMILY TO SUPPORT THEM. ALL 32 WHEELS. SO WITH OUR FUNDING FROM FLORIDA, WE HAVE DEVELOPED AUTISM NAVIGATOR IT'S A COLLECTION OF TOOLS AND RESOURCES. WE HAVE A 30 HOUR COURSE FOR EARLY INTERVENTION PROVIDERS. WE HAVE 7 STATES THAT ARE USING IT. AND IT IS ROLLING OUT AND WE HAVE GOTTEN GOOD FEEDBACK EXCEPT FOR THE LENGTH BUT A LOT OF NUANCES TO IT. WE DEVELOPED THEN A PRIMARY CORE AND THIS IS AN 8 HOUR COURSE. THIS ENDED UP BEING 8 HOURS AND SO THEN WE HEAR THAT IS TOO LONG T LOOKS LIKE THIS. OUR MOTTO IS YOU NEVER HAVE ENOUGH PURPLE AND WE LIKE IT TO BE SOOTHING. WE HAVE PRINT DOCUMENTS FOR PROVIDERS TO LEARN MORE AND SHARE WITH FAMILIES, TRANSLATE INTO SPANISH, WORKING ON PORTUGUESE AND CREOLE AND WE'LL ADD MORE LANGUAGES AS WELL. AND SO THEN WE BUILT A COURSE LIKE YOU BUILD IT AND HOW DO YOU GET THEM TO COME TO IT? SO WE HAD TO LEARN ABOUT MARKETING. WE STUDIED -- AND EVERYTHING WE DO WE STUDY AND DON'T START MORE THAN ONE THING AT A TIME. WE ADDED WEEKLY E-MAIL FOR 12 WEEKS AND ANOTHER 12 WEEKS. WE JUST REPEAT IN CASE YOU DIDN'T OPEN IT. WE HAD GOOD RESPONSE RATE AND IT'S SIGNIFICANTLY IMPROVED THE COMPLETION RATE SO VERY EXCITED ABOUT THAT. SECONDLY, WE LISTENED AND 8 SHOWERS TOO MUCH. SO WE BUILT THE JUMPSTART UNIT, 90 MINUTES. WE LEGALITY A FAMILY ECOSYSTEM BASED ON A LOT OF FEEDBACK AND IT HAS ALL SORTS OF BELLS AND WHISTLES. WHAT I WANT TO END WITH IN THE FEW MINUTES I HAVE LEFT IS TO TALK ABOUT THE SEAMLESS PATH FOR FAMILIES. SO, WE HAVE THE PROVIDER PORT OLE'. REPORTS ARE GENERATED. THEY JUST HIT A BUTTON SO THEY DON'T HAVE TO DECIDE WHAT THEY HAVE TO PUT IN THE REPORT. RELEASE IT, PRINT IT AND SAVE TO THE MEDICAL RECORD. THE PARENT PORT OLE' NEGATIVE SCREEN, POSITIVE SCREEN FOR COMMUNICATION DELAY ONLY OR POSITIVE SCREEN FOR COMMUNICATION DELAY AND AUTISM, FAMILIES GET LINKS TO DIFFERENT RESOURCES. SO I WANT TO JUST QUICKLY GO THROUGH THE FIRST IS THE FIRST TWO FOR ALL FAMILIES BECAUSE WE WANT TO GET GOOD INFORMATION ABOUT MILESTONES. THEY CLEARLY WANT IT. IT'S NEEDED. WE DEVELOPED THE 16X16 SERIES. YOU CAN GOAT THIS. FREE TO THE PUBLIC ON THE FIRST WORDS WEBSITE. WE ALSO BUILT THE FIRST WORDS WEBSITE BECAUSE FAMILIES WHO MIGHT HAVE A CHILD WITH AUTISM, MAY NOT GO TO THE WEBSITES. BECAUSE THEY ARE NOT THINKING AUTISM. BUT WE HOPE THEY'LL GO TO THIS WEBSITE BECAUSE THEY ARE THINKING WHAT DOES IT TAKE TO LEARN TO TALK? THIS IS JUST TO GET THEM THERE AND TEACH ALL PARENTS, GOOD PARENTING INFORMATION AND THEN TO FIND CHILDREN WITH AUTISM. SO THE 16X16, I'M GOING ZIP THROUGH THIS. IT'S A PICTURE SHOW. GO AND GET TO THIS. WE HAVE A LOOK BOOK. OUR FIRST ONE 16 GESTURES BY 16 MONTHS. IT TAKES YOU THROUGH THE GESTURES THAT IS START AT 10, 9 MONTHS, LEVEL, 12, CLAPPING AND THEN BLOW A KISS AT 13 MONTHS. THE SHUSH AS THEY CAN POINT A DISTANCE GESTURE AT 14. THUMBS UP AND I DON'T KNOW SYMBOLIC GESTURES NOW WORDS SHOULD BE UNFOLDING. WE CAN KNOW IF THERE IS GOING TO BE A WORD GAP OR DELAY BY LOOKING AT GESTURES AT 9, 10, 11 MONTHS. I AM VERY EXCITED, I WORKED HARD ON THIS DURING MY HOLIDAY BREAK, WE ARE LAUNCHING THE 16 ACTIONS WITH OBJECTS,ES I HOPE, TODAY. IT LOOKS LIKE THIS. IT SHOULD COME UP TODAY, IF NOT TOMORROW. IT MAY NOT -- MAY BE UP TODAY BUT MAY NOT BE FRIENDLY ON EVERY PLATFORM. THAT TAKES A WHILE. SO THE SNEAK PREVIEW, YOU'RE THE FIRST AUDIENCE TO SEE THIS. WE ARE VERY EXCITED. SO THINK ABOUT THIS. IT SHOWS US WHAT THEY ARE THINKING AND WHAT THEY KNOW. PATTING, PUTTING IN AT 12 MONTHS, AND PUTTING IN, THAT MEANS ALL THESE FUNCTIONAL ACTIONS PUTTING IN YOUR MOUTH, IN THE BOWL. AT 13 MONTHS, THEY START TO PRETEND. AND SO WE ARE STARTING TO SEE SYMBOLIC ACTIONS. SO THE PRETENDING TO FEED, WE START TO SEE OPEN AND CLOSE. WE START TO SEE AT 14 MONTHS, BACK-AND-FORTH AND UP AND DOWN LIKE GIGGLING A PAN. DRUMMING. AT 15 MONTHS, POURING IS A REALLY PISTOL ACTION. IT SHOWS YOU WHAT THEY KNOW -- PIVOTAL ACTION AND WASHING AND DRYING. AND THEN AT 16 MONTHS, NOW WE HAVE THE REALLY EMERGENT LITERACY SKILLS, STACKING, CUTTING OUT, SCRIBBLING, DRAWING. AND ALL OF THIS IS ABOUT THE BEST TIME TO GET READY FOR PRESCHOOL S FROM 9-16 MONTHS. SO THAT IS OUR MESSAGE. I HOPE YOU WILL HELP US SHARE IT. THIS IS FREE, AVAILABLE TO THE PUBLIC. WE WILL HAVE A PRINT DOCUMENT. THE LOOK BOOK IS ABOUT 50 PAGES SO THERE IS LOTS MORE. THAT WAS JUST A SAMPLE. SECONDLY THE SOCIAL COMMUNICATION GROWTH CHART. WE HAVE THE PICTURE. AND THEN WE NOW HAVE THIS WHOLE ON LINE MILESTONE. YOU CAN GET TO THESE AND SEE OUR MILESTONES EVERY TWO MONTHS. WE HAVE AN EXPLORE AND CHARTING FUNCTION WITH HUNDREDS OF VIDEOTAPES. WE HAVE VIDEO CLIPS THAT ARE GOING TO GO DOWN TO 7 TO 8 MONTHS AND ABOUT A WEEK OR TWO. AND THEN WE HAVE VIDEOS THAT GO THROUGH. WE HAVE A CHARTING FUNCTION THAT LOOKS LIKE THIS. AND THAT PROVIDERS CAN PULL UP AND A FRIENDLIER VERSION SO YOU CAN SEE MILESTONES THAT PARENTS ARE CHARTING AS THEY GO ALONG. AND THEN LASTLY, FAMILIES WITH A POSITIVE AUTISM SCREEN, WE HAVE A BEAUTIFUL PACKAGE. SO FIRST ABOUT AUTISM AND TODDLERS. FREE TO THE PUBLIC. WE LAUNCHED IT IN 2015. HAD OUR FIRST 3000 USERS A YEAR LATER. AND IN THIS PAST OCTOBER WE ARE UP TO 18,000 AND I SUSPECT WE ARE OVER 20,000 AND IN 120 COUNTRIES. IT SHOWS HOW WE CAN GO GLOBAL WITH THE INTERNET. WE HAVE A BRAND NEW LANDING PAGE WE LAUNCHED. SO FAMILIES, BECAUSE THEY TOLD US THEY WERE SCARED TO OPEN IT. SO NOW WE HAVE BITE SIZE QUESTIONS. LOTS OF INFORMATION LOOKS LIKE THIS INSIDE. THEY CAN SEE BEFORE. I HOPE TO SHOW THIS BUT NO TIME. AND THEN CHANGE WITH INTERVENTION. BUT YOU CAN SEE THAT SLIDE 16 IT'S AVAILABLE TO YOU. VIDEO GLOSSARY. WE WORKED WITH ALISON SINGER WAY BACK IN 2007. AND WE REBUILT IT, BROUGHT IT INTO THE AUTISM NAVIGATOR AND NOW IT'S A SINGLE SIGN ON. YOU GET FOR FREE. THIS GOES THROUGH THE DSM5 FRAMEWORK SO FAMILIES AND TODDLERS LEARN. I CAN'T TELL YOU HOW MANY PARENTS SAY, I WAS IN DENIAL OR I DIDN'T KNOW WHAT IT LOOKED LIKE. I DIDN'T THINK IT COULD BE AUTISM. WHEN I STARTED TO LOOK AT THE VIDEOS, I GET IT. I NEED TO GET GOING. AND THEN LASTLY, I'M SO EXCITED ABOUT THIS. WE LAUNCHED OUR HOW-TO GUIDE FOR FAMILIES LAST YEAR. IT'S A 12-HOUR COURSE FOR FAMILIES. WE HOPE VERY FRIENDLY. YOU CAN GET A DESCRIPTION OF IT ON AUTISM NAVIGATOR.COM. A WHOLE ON LINE COURSE. WE ARE ALSO JUST STARTING AND WE ARE GOING TO BE STUDYING IN OUR NEW -- A NEW ACE NETWORK WITH OTHER MEMBERS OF THE ASD PEDS NETWORK. WE ARE GOING TO BE STUDYING ROLLING THIS OUT AND HAVING FAMILY NAVIGATORS BE ABLE TO IMPLEMENT IT WHICH IS A VERY COST-EFFICIENT LET'S GET STARTED RIGHT AWAY TO TEACH PARENTS WHAT THEY CAN DO IN THEIR EVERYDAY LIFE. AND SO I JUST WANTED TO WRAP UP BY SHOWING YOU OUR NEW -- SO THE LAST NEW STRATEGY THAT WE ADDED IS THE DOCTORS DON'T REALLY WANT TO SHARE THIS KIND OF A MESSAGE WITH THE FAMILIES, WHICH IS MAYBE SURPRISING BUT -- UNDERSTANDABLE. WE HAVE ADDED TO THE FIRST WORDS WEBSITE A NEW BUTTON CALLED SCREEN MY CHILD. AND FAMILIES SO PROVIDERS CAN NOW SEND THEIR FAMILIES TO OUR WEBSITE, CLICK ON THAT BUTTON, THE FAMILIES GOAT THIS PAGE, IF THEIR CHILD IS BETWEEN NINE-18 MONTHS, WE CAN SCREEN THEM ON LINE AND WE WILL SCHEDULE A 30 MINUTE MEETING WITH THEM BY PHONE OR VIDEOCONFERENCE. THEY CAN COME IN FACE-TO-FACE BUT MOST FAMILIES PREFER. WE CAN GIVE THEM RESULTS OVER THE PHONE IF IT'S A POSITIVE SCREEN F IT'S NEGATIVE WE RELEASE THE RESULT. CONSENT FORMS ON LINE. THEY HAVE TO FULL THIS IN AND IT WORKS. WE STARTED THIS IN NOVEMBER. AND IT IS EXCITING TAKING OFF. WE ARE USING SOCIAL MEDIA. IF FAMILIES COME IN THROUGH THE SCREEN MY CHILD, THEY GET FREE SUBSCRIPTION TO THE SOCIAL COMMUNICATION GROWTH CHART. SO THAT IS AN INCENTIVE. SO WE HOPE HE'LL GO, HOW DO I JOIN? FOR FREE, LET'S DO IT. FAMILIES OFTEN DON'T THINK THEY NEED TO HAVE THEIR CHILD SCREENED BECAUSE THEY ARE NOT WORRIED ABOUT THEIR CHILD'S DEVELOPMENT. IT ALL CIRCLES BACK. IF WE CAN TEACH THEM THE MILESTONES, THEN THEY'LL KNOW TO BE WORRIED OR NOT. SO I'M GOING TO GO TO MY LAST SLIDE. FOLLOW US ON FACEBOOK. SOCIAL MEDIA WILL BE A REALLY IMPORTANT WAY TO REACH EVERYBODY. AND I'D LIKE TO THANK YOU AND HOPE THAT YOU WILL SEE THIS AS OUR CHANCE TO DO SOMETHING REALLY MEANINGFUL FOR FAMILIES. THANK YOU. [ APPLAUSE ] >> I WANT TO SAYS HOW HONORED AND REALLY PRIVILEGED I FEEL TO BE HERE WITH THIS COMMITTEE TODAY. AND I REALLY WANT TO THANK DENNY AND DENISE WHO IS THE OTHER PROJECT OFFICER FOR NOT ONLY INVITING US TO BE HERE IN THE ASD PEDS NETWORK BUT ALSO WE ARE A REALLY WELL-SUPPORTED NETWORK IN TERMS OF OUR PROGRAM OFFICERS ARE FIGHTING FOR US. SO I REALLY APPRECIATE THAT AND ALSO HELPING US THINK THROUGH SOME OF DIFFICULT CHALLENGES THAT WE HAVE ENCOUNTERED. SO. >> DR. GORDON: WE WILL HAVE DISCUSSION TIME. WE RESERVED A HALF HOUR OF DISCUSSION AT THE END OF THE FOUR-PANEL PRESENTATIONS. THIS IS WHY WE TRY TO PRE-LOAD ALL THESE THINGS. ALISON, YOU HAD A COMMENT. WHY DON'T WE GO AHEAD AND DO THAT WHILE WORKING THROUGH THE TECHNICAL PROBLEMS. >> SO FOR AMY, WE KNOW FROM THE BABY SIBS RESEARCH AND FROM A STUDY THAT WAS PUBLISHED EARLIER THIS YEAR FROM COLUMBIA, THAT YOU'RE MORE LIKELY TO GET AN EARLY DIAGNOSIS IF YOU'RE NOT THE FIRST-BORN CHILD OR IF YOU HAVE A LOT OF INTERACTION YOUR GRANDPARENTS. SO THAT REALLY SPEAKS TO THE VALUE OF PARENTING EXPERIENCE. SO, IF WE WANT TO BE MORE EFFICIENT IN DIAGNOSING KIDS, SHOULD WE NOT BE TARGETING THIS PROGRAM AT NEW PARENTS? PERHAPS THROUGH OBGYN OFFICES? >> CAN YOU HEAR ME? THINK SO MANY THINGS DURING PREGNANCY THAT YOU'RE WORRIED ABOUT WHICH IS THE BIRTH. AND I THINK EVEN AFTER SHORTLY AFTER BIRTH, YOU'RE WORRIED ABOUT FEEDING, EATING AND SLEEPING. SO OUR GROWTH CHART STARTS AT 6 MONTHS N TERMS OF THE OBSERVABLE SIGNS OF DEVELOPMENT STARTING AT 6 MONTHS BUT FROM BIRTH TO 6 MONTHS IS ABOUT GETTING REGULATING THE ABILITY TO SLEEP AND EAT AND MAYBE SOME VERY EARLY SIGNS. AUTISM USUALLY DOESN'T INVOLVE UNTIL 9-18 MONTHS. WE THINK STARTING AT 6 MONTHS, AND WE HAVE ON LINE GUIDED TOUR FREE TO THE PUBLIC THAT PARENTS CAN JOIN ON LINE TO LEARN ABOUT THE MILESTONES. >> IS THERE SOME WAY TO TARGET NEW PARENTS? >> WE ARE WORKING IN FLORIDA OFFICE OF ALL DIFFERENT AGENCIES THAT TOUCH THE PEDIATRIC POPULATION BUT OF COURSE PRIMARY CARE AS WELL AND FAITH-BASED ORGANIZATIONS. SO ANY AGENCY -- WE TRIED A LOT OF THINGS GOING TO WALMART WITH A BOOTH DOESN'T WORK. BUT I THINK REACHING OUT -- CHILD PROVIDERS WERE VERY EXCITED ABOUT THE POTENTIAL -- I THINK THERE IS A LOT OF HOME VISITING SYSTEMS TO REACH OUT TO AS WELL. I THINK EVERY POSSIBLE -- WIC WOULD BE IDEAL. IT'S TRICKY. THEY HAVE A LOT THAT THEY ARE SUPPOSED TO DO BUT WIC REACHING LOW-INCOME FAMILIES. DOCTORS LIKE IT, FAMILIES LIKE IT AND IT CAN GET THEM TO THE WEBSITE TO KNOW SHI SCREEN MY CHILD. I SHOULD JOIN A GUIDED TOUR AND LEARN. I JUST GOT A NEW PUPPY. THERE IS PUPPY CLASSES ALL OVER THE PLACE. YOU DON'T EVEN THINK ABOUT GOING TO A PARENTING CLASS BUT YET IT'S EXPECTED IF YOU GET A PUPPY. WE HAVE TO DO BETTER. YOU'RE RAISING A GREAT POINT. >> I WANTED TO RAISE SOMETHING BECAUSE I WAS TALKING ABOUT THIS OVER LUNCH AND NORMALLY I WOULDN'T EVEN OCCUR TO ME TO MENTION. IN THE AUTISTIC COMMUNITY, WE SEE A PARTICULAR PATTERN OF ADULT DIAGNOSIS WHERE AN ADULT IS DIAGNOSED FOR THE FIRST TIME AFTER BECOMING THE PARENT AND HAVING THEIR CHILD BE DIAGNOSED. AND THE PATTERN IN THIS PATTERN, WHAT WE OFTEN SEE, AND THIS MADE ME -- ALISON'S POINT WAS SORT OF INTERESTING IN THAT LIGHT, WE SEE PARENTS WHO ARE COMPLETELY UNCONCERNED FOR LONGER THAN THEY MIGHT OTHERWISE HAVE BEEN BECAUSE THEIR CHILD IS ACTING IN A PARTICULAR WAY AND THE GRANDPARENT IS SAYING, WHATEVER. YOU ACTED LIKE THAT TOO! AND SO, THE PARENT WILL SAY, OKAY, WELL, THE KID IS JUST LIKE ME. I'M NORMAL. AND SO IS MY CHILD. AND THESE KIDS -- IT'S NOT JUST THAT THE KIDS ARE BEING IDENTIFIED LATER BUT ALSO WE ARE MISSING A OPPORTUNITY TO COMMUNICATE WITH THE ADULTS ON THE SPECTRUM. IT'S A NEAR CERTAINTY THAT AT SOME POINT THEY ARE GOING TO, IF THEY ARE INTERACTING WITH THE KID ON THE SPECTRUM, SOME PROPORTIONS OF THOSE KIDS HAVE ADULTS ON THE SPECTRUM AND WERE NEVER IDENTIFIED. AND TO BE ABLE TO TALK TO THOSE PARENTS IN A RESPECTFUL WAY BECAUSE IF THEY TALK ABOUT IT IN A STIGMATIZING WAY, THEY WILL ALIENATE THOSE PARENTS. I THINK JUST LIKE WE KNOW THAT ONE WHO IDENTIFIES CHILDREN WITH AUTISM, THE SIBLINGS HAVE A 25% CHANCE OF HAVING AUTISM AS WELL AND THEY SHOULD BE SCREENED. SIMILARLY I THINK THE PARENTS, THAT'S A REALLY GOOD POINT. I ALSO AND THE EXECUTIVE DIRECTOR OF THE STATE-FUNDED OUR CENTER AND WE CONSTANTLY SEE ADULTS WHO ARE NOT DIAGNOSED WHEN THEY WERE YOUNGER. SO IT'S VERY COMMON. I DON'T KNOW THE PERCENTAGE EVER THOSE WHO DON'T HAVE CHILDREN, I DON'T WANT TO RELY ON THEM HAVING TO BECOME PATIENTS TO BE IDENTIFIED BUT I THINK WE NEED TO DO BETTER. BUT IF YOU HAVE A CHILD WITH AUTISM, THEY SHOULD BE SCREENED. THAT'S A REALLY GOOD POINT. >> STEWART, YOU MENTIONED YOU HAD SOMETHING TO SAY? SO I WANT TO THANK DR. WETHERBY. THAT WAS A GREAT PRESENTATION AND I WANT TO MAKE SOME POINTS ABOUT LEARN THE SIGNS, ACT EARLY. AS THE COMMITTEE MEMBERS KNOW, BECAUSE I HAVE DISCUSSED IT HERE AND PRESENTED BEFORE ON LEARN THE SIGNS, ACT EARLY, IT AIMS TO ENGAGE AND EDUCATE PARENTS AND CAREGIVERS ON WHAT DEVELOPMENTAL MILESTONES ARE AND HOW TO CELEBRATE AND TRACK THEIR CHILD'S MILESTONES IN ALL DOMAINS OF DEVELOPMENT, INCLUDING SOCIAL, EMOTIONAL, LANGUAGE COMMUNICATION, COGNITIVE, AND MOVEMENT AND PHYSICAL DEVELOPMENT. SO LEARN THE SIGNS, ACT EARLY IS BROADER WITH REGARD TO THE DEVELOPMENT AND IT'S NOT AUTISM SPECIFIC. BUT IT LOOKS FOR DEVELOPMENTAL DELAYS OR DISABILITIES THAT COULD BE INDICATIVE OF MANY CONDITIONS THAT COULD BENEFIT FROM DEVELOPMENTAL SERVICES AND LEARN THE SIGNS, ACT EARLY, PROVIDES A SUITE OF MATERIALS THAT ILLUSTRATE MILESTONES IN THESE DOMAINS IN DIFFERENT FORMATS, INCLUDING A NEW PHOTO AND VIDEO LIBRARY AND A MOBILE PHONE APP. NOW, THE MILESTONES THEMSELVES, THEY DO COME FROM THE AMERICAN ACADEMY OF PEDIATRICS BRIGHT FUTURES AND FROM CARING FOR YOUR BABY AND YOUNG CHILD WITH SOME LANGUAGE ADAPTATIONS TO IMPROVE READABILITY AND PARENT COMPREHENSION. AS DR. WEALTHER BEE MENTIONED, IN YOUR PRESENTATION, THE MILESTONES IN GENERAL ARE TYPICALLY REPEATED AS THE AVERAGE AGE THAT CHILDREN SHOULD TYPICALLY REACH MILESTONES. BUT LEARN THE SIGNS, ACT EARLY, MADE A PURPOSEFUL CHOICE TO REPORT MILESTONES WHEN MOST CHILDREN ARE EXPECTED TO REACH THEM. THIS WAS AFFIRMED DURING RECENT TESTING. WHEN PARENTS INTERPRETED AS SIMPLY AVERAGE AS HALF WILL MEET BY NOW AND HALF WILL NOT, THEY USE THAT AS A REASON NOT TO BE CONCERNED ABOUT THEIR CHILD NOT YET ACHIEVING PARTICULAR MILESTONES. MOST CHILDREN REACH THESE MILESTONES BY THIS AGE AND FEEDBACK FROM PARENTS SUGGEST THAT CHILDREN MAKING THEM MORE CONCRETE MAY MAKE THEM MORE LIKELY TO TAKE ACTION WHEN MISSING MILESTONES. MATERIALS CALL A DUEL ACTION TO ACT EARLY WHEN PARENTS NOTICE A CHILD IS NOT MEETING MILESTONES OR HAS ONE OR MORE RED FLAGS. AND THIS CALL TO ACTION INCLUDES BRINGING CONCERN TO THE HEALTH CARE PROVIDER ASKING ABOUT THE CHILD'S DEVELOPMENTAL SCREENING RESULTS AND PROVIDING INFORMATION ON HOW TO CONTACT EARLY INTERVENTION SERVICES. SO ACT EARLY MESSAGE WAS EVALUATED, HAVE BEEN EVALUATED IN THE PAST AS RECENTLY AS LAST YEAR AND TESTED WITH PARENTS IN HEALTH CARE PROVIDERS FOR RELEVANCE AND COMPREHENSION. AND JUST A COUPLE OF MORE VERY BRIEF POINTS. LEARN THE SIGNS, ACT EARLY MATERIALS AS FOLKS KNOW, THEY ARE FREE. THEY ARE RESEARCH-BASED. THEY ARE AUDIENCE TESTED. DESIGNED FOR PARENTS AND USEFUL FOR ALL THOSE WORKING WITH YOUNG CHILDREN INCLUDING CHILD CARE PROVIDERS AND THEY ARE WRITTEN IN PLAIN LANGUAGE, IN ENGLISH, SPANISH, CHINESE, COUNTRY AN AND VIETNAMESE -- KOREAN -- AND FOCUS ON WHEN TO ACT EARLY AND WHAT TO DO WITH CONCERNS. THE PROGRAM IS COMMITTED TO CONTINUOUS IMPROVEMENT AND CONTINUED EVALUATION OF THE CENTRAL A PRIORITY. AND THE PROGRAM WELCOMES ALL IDEAS FROM SPEAKERS HERE AS WELL AS FROM OTHERS ON HOW BEST TO DO THAT. >> THANK YOU. NOW WE HAVE OUR TECHNICAL PROBLEMS FIXED SO WE WILL PROCEED ON TO THE NEXT PANELIST. ALICE CARTER. >> THANK YOU VERY MUCH. AND THANK YOU FOR FIXING THE COMPUTERS. SO I'M GOING TO TALK ABOUT OUR MULTI-STAGE SCREENING PROTOCOL THAT WE ARE PARTNERING WITH PART C EARLY INTERVENTION AGENCIES TO IMPLEMENT AND THIS IS AN IMPLEMENTATION DISSEMINATION PROJECT WITH REALLY AN EYE TOWARDS SUSTAINABILITY IF THE COMMUNITY. THIS IS NOT -- I'M REPRESENTING THIS WORK BUT WORK THAT TAKES A VILLAGE AND I WANT TO PARTICULARLY HIGHLIGHT CHRIS AND ABI WHO IS VERY INVOLVED IN DAY-TO-DAY OPERATIONS. I'M GOING BRIEFLY DESCRIBE OUR PARTS OF OUR PROJECT AND OUR PRELIMINARY FINDINGS AND TALK ABOUT SOME IMPLICATIONS OF UNDERSTANDING SCREENING AS A PROCESS RATHER THAN AS AN EVENT WITH A PARTICULAR INSTRUMENT. THIS PICTURE COMES FROM EMILY FEINBERG SUPPOSED TO REPRESENT ALL OF THE ASD PEDS NETWORK WORK. AND SO, I'M WORKING IN THE LEFT IN PART C BUT SEVERAL OF OUR MEMBERS ARE WORKING IN PRIMARY CARE. WE ALSO VERY MUCH ARE THINKING ABOUT THE FAMILY AND TRYING TO MAKE OUR SCREENS FAMILY CENTER CENTERED. AND RECOGNIZING VARY CONCERNS AND KNOWLEDGE AND CULTURAL FRAMEWORKS THAT PARENTS WILL APPROACH SCREENING WITH AS WELL AS THE DIFFERENT LEVELS OF KNOWLEDGE AND ATTITUDES AND BELIEF THAT BOTH EI PROVIDERS AND EARLY INTERVENTION PROVIDERS AND PEDIATRIC STAFF WILL APPROACH FAMILIES WITH. AND ALL OF US SHARE DOING SCREENING WITH A VARIETY OF TOOLS. WENDY'S PROJECT IS FACILITATING ENGAGEMENT BY HAVING A RAPID INTERVENTION AVAILABLE IMMEDIATELY. ALL OF US ARE EVENTUALLY DOING DIAGNOSTIC ASSESSMENTS AND THEN TRACKING ENGAGEMENT AND SERVICES BECAUSE IF WE ARE ABLE TO IDENTIFY CHILDREN EARLY, BUT WE ARE NOT ABLE TO CHANGE SERVICES PATTERNS, THEN WE HAVE JUST NOT BEEN SUCCESSFUL. THIS PARTICULARLY UNFORTUNATE BECAUSE PART C EARLY INTERVENTION IS A FEDERAL PROGRAM THAT IS FREE TO FAMILIES AND HAS THE POTENTIAL TO DO A LOT OF GOOD. AND I'M LIVING IN MASSACHUSETTS WHERE WE ARE HEAVILY RESOURCED EARLY INTERVENTION PROGRAMS. OUR AGENCY TOUCHES APPROXIMATELY 30% OF THE CHILDREN IN THE STATE. SO THAT DOESN'T MEAN THAT EACH OF THOSE CHILDREN GET SERVICES BUT A CALL IS MADE OR SOME CONTACT IS MADE. WHICH I THINK ALSO CHANGES THE CALCULUS OF HOW MANY CHILDREN ARE MISSED. SO A LITTLE BOGGED HEALTH DISPARITIES. THERE IS MULTIPLE DEFINITIONS OUT THERE. BUT WE ARE COMING AT THIS FROM A SOCIAL JUSTICE PERSPECTIVE SO WE SEE HEALTH DISPARITIES AS A HEALTH DIFFERENCE OR A CHAIN OF EVENTS THAT SIGNIFIED BY A DIFFERENCE IN THE ENVIRONMENT, DIFFERENCE IN ACCESS, DIFFERENCE IN UTILIZATION OF SERVICES OR QUALITY OF SERVICES AVAILABLE TO PEOPLE. DIFFERENCE IN HEALTH STATUSES OR A PARTICULAR HEALTH OUTCOMED THAT DESERVES FURTHER SCRUTINY. WHEN WE FIRST PROPOSED THIS PROJECT, WE WERE AWARE WHEN FAMILIES FROM UNDER RESOURCED BACKGROUNDS MADE IT TO PART C SERVICES AND EARLY INTERVENTION, STILL THERE WERE DISPARITIES IN TERMS OF WHEN CHILDREN RECEIVED A DIAGNOSISES OF AUTISM. SO THESE FAMILIES HAD ALREADY REACHED OUT. THEY ALREADY AGREED TO PARTICIPATE IN SERVICES. WE FELT THIS WAS LOW-HANGING FRUIT IN COMING PAIR SON TO THE WORK THAT EMILY WILL TALK ABOUT LATER IN WHICH TRYING TO REACH FAMILIES WHO ARE NOT YET INTERESTED IN SERVICES AND AREN'T CONCERNED ABOUT THEIR CHILDREN'S DEVELOPMENT. WE CAN LOOK AT A VARIETY OF CONTRIBUTING FACTORS AND THE DIFFERENT CONTRIBUTING FABBORS MAY HAVE DIFFERENT SOLUTIONS. SO IT IS REALLY IMPORTANT TO THINK ABOUT THAT AND HOW WE ORGANIZE HEALTH SERVICE SYSTEMS AND HOW WE TRAIN OUR WORKFORCE WITHIN THOSE SYSTEMS. SO IN TERMS OF FAMILY FACTORS, LANGUAGE IS CERTAINLY A BIG BARRIER. INSURANCE STATUS, TRANSPORTATION, IMMIGRATION STATUS, WHETHER YOU'RE IN A FAMILY OR CENTER-BASED CHILD CARE SETTING, CAN DETERMINE WHETHER A PROFESSIONAL IS GOING TO TALK TO YOU ABOUT CONCERNS ABOUT YOUR CHILD. DO YOU EXPECT THAT THE DIAGNOSTIC SERVICES YOU CAN ACCESS WILL BE GOOD FOR YOU AND YOUR CHILD AND YOUR FAMILY? DO YOU TRUST PROVIDERS? ARE YOU AFRAID? WE HEAR FROM MANY FAMILIES THEY DON'T WANT TO GET A DIAGNOSIS BECAUSE THEY ARE CONCERNED THAT THAT WILL MEAN THAT PEOPLE THINK THEY ARE A BAD PARENT. THAT THEY ARE AT FAULT IN SOME WAY. AND ALSO JUST GENERAL KNOWLEDGE AND BELIEFS ABOUT BOTH CHILD DEVELOPMENT AND THE SERVICES THEY MIGHT BE ELIGIBLE FOR IN TERMS OF CLINIC AND PROVIDER-LEVEL FACTORS, WITH FAMILIES WORKING MULTIPLE JOBS, WE NEED TO THINK ABOUT HOURS OF OPERATION, THE COST OF SERVICES, IS THERE ANYONE AT THE AGENCY THAT LOOKS LIKE THE FAMILY? HOW COMFORTABLE ARE THEY GOING TO FEEL WHEN THEY ARRIVE? WE ALSO HAVE A BIG PROBLEM WITH WE ARE ALL USING MULTIPLE SCREENING TOOLS THAT HAVE BEEN VALIDATED IN SOME POPULATIONS BUT FEW OF THEM HAVE BEEN FORMERLY VALIDATED IN DIFFERENT LANGUAGES OR IN DIVERSE COMMUNITIES. SO IT IS QUITE POSSIBLE THAT A FAMILY ISN'T SURE THIS SCREENING TOOL IS GOING TO WORK FOR ME. WELL, THERE IS NOT SO MUCH EVIDENCE TO SUPPORT THAT IT WILL. ALTHOUGH WE CERTAINLY HOPE IT WILL. AND THEN WITHIN CLINIC PROVIDERS, WE HEAR NEGATIVE OR MISTAKEN PERCEPTIONS, LOW EFFICACY EXPECTATIONS ABOUT A FAMILY FOLLOWING THROUGH. THEY'LL SAY THIS CHILD IS MUCH TOO YOUNG AT 14 MONTHS TO HAVE A DIAGNOSIS OF AUTISM LET'S. WAIT AND SEE. THIS FAMILY IS CHAOTIC. I DON'T EXPECT THEM TO FOLLOW-THROUGH SERVICES SO WHY BOTHER SCREENING OR REFERRING TO DIAGNOSIS. IT'S TOO MUCH TIME FOR THIS FAMILY AT THIS TIME. SO THERE IS ALSO SOME PATERNALISTIC AT ATTITUDES THAT INTERFERE WITH ACCESS TO SERVICE SERVICES. OUR BROADER PROJECT IS USING A HEALTH BELIEFS FRAMEWORK. WE KNOW FROM WORK NOT IN AUTISM BUT IN SOCIAL, EMOTIONAL AND BEHAVIORAL PROBLEMS, THAT PARENTS WILL SEEK HELP UNDER PARTICULAR CONDITIONS. SO FIRST, LIKE IN ALCOHOL, YOU HAVE TO THINK YOU HAVE A PROBLEM. SO IF THE PARENT DOESN'T APPRAISE THE CHILD AS HAVING A DEVELOPMENTAL OR BEHAVIORAL OR SOCIAL PROBLEM, THEY ARE NOT GOING TO THINK ABOUT SEEKING HELP. THEN THEY ARE THINKING ABOUT SEEKING HELP, THEY ARE STILL NOT NECESSARILY SEEKING HELP BUT THEY ARE THINKING ABOUT IT. IN OUR DATA, NO ONE ACTUALLY FOLLOWS THROUGH AND TALKS TO A PEDIATRICIAN OR SEEKS HELP IN ANOTHER VENUE WITHOUT FIRST THINKING ABOUT IT. AND THEN ONCE THEY DECIDED TO SEEK HELP, THEY NEED AN ACTION PLAN AND THEN THEY SEEK HELP BUT THEN THEY ARE ALSO DECISIONS ABOUT MAINTAINING THAT HELP SEEKING BEHAVIOR AND THE DETERMINANTS OF DIFFERENT STEPS MAY BE DIFFERENT. WHAT WE KNOW IS THAT CONCERN OR WORRY IS A STRONG MOTIVATOR OF SEEKING HELP. THE KIND OF PROBLEM YOU'RE CHILD HAS SO IF IT'S AN EXTERNALIZING DISRUPTIVE BEHAVIOR THAT IS VERY VISIBLE IN THE COMMUNITY YOU'RE MORE LIKELY TO SEEK HELP F YOU'RE A BOY F YOU'RE OLDER, AND IF YOU'RE MORE SEVERE, YOUR PARENTS ARE MORE LIKELY TO SEEK HELP FOR YOUR CONDITION. AND THAT SORT OF FITS WITH MISSING CHILDREN WHO MAY BE FUNCTIONING AT COGNITIVELY HIGHER LEVELS OR MAY HAVE MILDER SYMPTOMS. EVEN THOUGH THOSE CHILDREN WILL DIFFICULTY BENEFIT FROM SERVICES. SO THE OVERARCHING GOALS OF WHAT WE CALL LOCALLY ARE ABC D EARLY SCREENING PROJECT, ARE EVALUATING SYSTEMS OF CARE RATHER THAN EVALUATING INDIVIDUAL MEASURES AND WILL WE ARE TRYING TO SEE IF BY DISSEMINATING OR TRAINING 3 PARTNERS OF EARLY INTERVENTION PROGRAMS, TO DO A TWO-STAGE SCREENING PROCESS, CAN WE REDUCE HEALTH DISPARITIES IN EARLY DETECTION AND DIAGNOSIS OF AUTISM SPECTRUM DISORDERS, RECEIPT OF TAILORED OR AUTISM SPECIFIC SERVICES AND ULTIMATELY IMPROVE DEVELOPMENTAL OUTCOMES. OUR PROJECT IS MULTIFACETED SO I ON'T DESCRIBE ALL THE MOVING PARTS BUT USING MIXED METHODS AND TALKING WITH A LOT OF PEOPLE IN OPEN-ENDED WAYS. LEARNING A LOT OF INFORMATION. USING HEALTH SYSTEMS ENGINEERING METHODS TO MONITOR OUR IMPLEMENTATION. COST ANALYSIS TO FIGURE OUT WHAT SCREENING COSTS. AND ALSO DEVELOPING SOME VERY COOL STATISTICAL SIMULATION MODELS FOR TESTING HYPOTHESES BASED ON THE EXISTING KNOWLEDGE WE HAVE. AND FOCUSING ON SCREENING PROCESS WHICH STARTS WHEN YOU HAND THE SCREENER TO THE PARENT OR BEFORE YOU HAND THE SCREENER TO THE PARENT, YOU'RE OPENING UP A DIALOGUE OR CONVERSATION THAT HAS TO CONTINUE THROUGH TO RECEIPT OF SERVICES. SO WE OFFER OUR MODEL IN BOTH ENGLISH AND SPANISH. THE AGENCIES WE ARE WORKING WITH OWNED THE MODEL. SO THEY TALK ABOUT IT AS THEIRS NOT OURS WHICH SING A BIG SUCCESS FOR DISSEMINATION. AND WE ARE DOING TARGETED UNIVERSAL SCREENING SO WE WANT TO SCREEN EVERYONE THAT IS IN EARLY INTERVENTION BUT RECOGNIZE THAT THIS IS A POPULATION AT MUCH HIGHER RISK FOR AUTISM THAN IN A PEDIATRIC SETTING. AND WE ARE USING STANDARDIZED EVIDENCE-BASED MEASURES AND WE ARE BUILDING ON EXISTING FAMILY, EARLY INTERVENTION PROVIDER RELATIONSHIPS BECAUSE THESE PROVIDERS ARE IN HOMES USUALLY ONCE A WEEK, SOMETIMES A BIT MORE THAN THAT. SOMETIMES EVERY OTHER WEEK. AND WE ARE ALSO USING TECHNOLOGY FOR TRAINING. WE HAVE A LOT OF WEB-BASED TOOLS AT OUR EARLY INTERVENTION PROVIDERS CAN ACCESS AND USING THIS APP THAT MAKES OUR LIVES EASIER WHEN A CHILD SCREENS POSITIVE AT THE SECOND STAGE OF SCREENING, THEY CAN USE THEIR PHONE TO SCHEDULE AN APPOINTMENT WITH OUR RESEARCH TEAM SO WE ALSO OFFER RAPID DIAGNOSTIC SERVICES WHICH IS PART OF MOTIVATION FOR OUR SITES BUYING INTO THE PROCESS. SO IN OUR STAGE I SCREENER, WE ARE USING A AUTISM SPECIFIC SCREENER. THE PARENT OBSERVATIONS OF SOCIAL INTERACTIONS WHICH IS VERY SIMILAR TO THE M CHAT BUT USES A DIFFERENT RESPONSE FORMAT WHICH ISN'T JUST TRUE FALSE. IT HAS MULTIPLE LEVELS. AND THEN THE BRIEF INFANT TODDLER AND SOCIAL EMOTIONAL ASSESS CHAPTER IS A MORE COMPREHENSIVE SOCIAL EMOTIONAL AND BEHAVIORAL PROBLEM ASSESSMENT TOOL AND THAT DOES INCLUDE 17 AUTISM SPECIFIC ITEMS AND WE ALSO WILL MOVE YOU FORWARD IN OUR SCREENING PROCESS IT'S EITHER EARLY INTERVENTION PROVIDER OR A PARENT IS CONCERNED ABOUT AUTISM. AND THEN WE DO A SECOND STAGE SCREENER BECAUSE WE DON'T WANT TO FLOOD THE SYSTEM WITH THE CHILDREN WHO MIGHT BE POSITIVE AT STAGE 1 AND USING WENDY STONE'S OBSERVATIONAL ASSESSMENT AND THEN CHILDREN WILL COME TO US FOR DIAGNOSTIC ASSESSMENT THAT IS SIMILAR TO WHAT CHILDREN GET AT THE HOSPITAL OR ALTHOUGH WE TALK MORE TO PARENTS WHEN WE DIAGNOSE A CHILD WITH AUTISM ABOUT FAMILY FUNCTIONING AND COPING AND THAT IS THIS A VERY DIFFICULT THING TO EXPERIENCE ALTHOUGH MANY FAMILIES ARE VERY HAPPY ABOUT IT BECAUSE THEY HAVE SUSPECTED SOMETHING HAS BEEN WRONG FOR A LONG TIME. SO WE ARE TARGETING THESE THREE AGENCIES BECAUSE THEY WORK IN THE CIRCLE WAS PROMISE, WHICH IS A AREA IN GREATER BOSTON THAT IS BASICALLY CHARACTERIZED BY A LOT OF UNDER RESOURCED FAMILIES. I'M GOING TO TALK ABOUT VARIOUS PHASES, A SERIES OF FOLLOW-UP INTERVIEWS AS WELL WITH FAMILIES WHEN THEY ARE STILL IN EARLY INTERVENTION AFTER A DIAGNOSIS AND THEN WHEN THEY TRANSITION TO PRESCHOOL BECAUSE WE ARE CALLING THEM TO FIND OUT WHAT SERVICES ARE YOU GETTING AND HOW HAPPY ARE WITH YOU THOSE SERVICES? WHAT SERVICES YOU WANT THAT YOU'RE NOT GETTING? SO ONE THING THAT HAPPENED IS WE REALLY CHANGED THE AWARENESS OF THE EARLY INTERVENTION PROVIDERS WE ARE WORKING WITH ABOUT AUTISM. SO WE HAVE TRAINED ABOUT 160 EARLY INTERVENTION PROVIDERS IN OUR SCREENINGISH VENTION AND ALSO JUST IN THE FIRST STAGE OF OUR SCREENING INTERVENTION AND TALKED WITH THEM A LOT ABOUT WHAT AUTISM LOOKS LIKE AND HOW TO TALK TO PARENTS WHEN YOU HAVE CONCERN THAT A CHILD MIGHT HAVE AUTISM. WE HAVE TRAINED 32 EARLY INTERVENTION PROGRAMS IN A DAY LONG STAT TRAINING AND 94 OF OUR SHALLY INTERVENTION PROVIDERS HAVE COME TO DIAGNOSTIC ASSESSMENTS SO THEY ARE SERVING AS NAVIGATORS BETWEEN THE SCREENING AND THE BRIDGE TO DIAGNOSTIC SERVICES WHICH THEY DO WITH US AT THE RESEARCH PROGRAM FOR DIAGNOSIS BUT ALSO IN THE COMMUNITY, WHICH HAS BEEN GREAT. SO ONE OF THE FIRST THINGS WE LEARNED IS THAT THE EARLY INTERVENTION PROVIDERS REALLY NEED A LOT OF SUPPORT IN HAVING DIFFICULT CONVERSATIONS. SOMEONE MENTIONED THIS EARLIER. THEY ARE NOT WELL-TRAINED IN INTERACTING WITH PARENTS. THEY ARE USED TO TALKING WITH CHILDREN. AND PLAYING WITH CHILDREN. AND THEY REALLY FELT VERY UNCOMFORTABLE RAISING CONCERNS WITH PARENTS AND AT TIMES AS AMY MENTIONED, THEY CHOOSE TO DELAY SUGGESTING FURTHER SCREENING SO QUI DEVELOPED RESOURCES TO HELP THEM AND THAT SEEMS TO BE HELPFUL FOR THEM MOVING FORWARD. AND THEN ALSO KNOWING WHETHER PARENTS HAVE CONCERNS OR NOT. NOT NECESSARILY ABOUT AUTISM, BUT ABOUT DEVELOPMENT AND BEHAVIORAL AND SOCIAL DEVELOPMENT HELPS EARLY INTERVENTION PROVIDERS KNOW HOW TO OPEN THIS CONVERSATION AND THEY TELL US THAT WHEN THEY CAN SEE THAT PARENTS CHECKED OFF RED FLAG BEHAVIORS, EVEN THOUGH THEY ARE NOT REPORTING CONCERNS, THEY CAN WONDER AND REFLECT ON THOSE BEHAVIORS TOGETHER AT THE POINT OF STARTING A CONVERSATION WHEN THE FAMILIES REPORT CONCERN, AND THAT IS ONLY IF ABOUT HALF OF THE TIME SO THIS IS VERY CONSISTENT WITH WHAT AMY SAID LET'S. OF FAMILIES WILL TELL YOU THE BEHAVIORS BUT THEY JUST ARE NOT CONCERNED. NOT ONLY ABOUT AUTISM, BUT ABOUT THEIR CHILDREN'S SOCIAL DEVELOPMENT OR BEHAVIOR. AND THIS IS IT QUITE INTERESTING BECAUSE WHEN WE LOOK AT THE NON-AUTISM BEHAVIORS WHICH INCLUDE DISRUPTIVE AGGRESSION BEHAVIORS, INTERNALIZING ANXIETY BEHAVIORS, AND SLEEP AND EATING PROBLEMS, THE KIDS WHO LATER GO ON TO RECEIVE A DIAGNOSIS OF AUTISM ARE ELEVATED IN ALL THOSE AREAS IN ADDITION TO THE AUTISM SYMPTOMS RELATIVE TO CHILDREN WHO DON'T HAVE OR GO ON TO SCREEN POSITIVE AT ALL. SO IN TERMS OF WHAT WE HAVE ACCOMPLISHED, OUR PARTNERS SCREENED ABOUT 2800 CHILDREN. OF THOSE 70 -- THAT REPRESENTS 70% OF THE CHILDREN IN THESE AGENCIES SO WE ARE ANAL TO TRACK WHO IS GETTING SCREENED -- ABLE TO TRACK -- ABOUT 35-40% OF CHILDREN ARE SCREENING POSITIVE. 70% OF THOSE WILL MOVE ON TO GET A STAT WHEN INDICATED. 70% OF THOSE WHO GO ON TO GET A STAT ARE POSITIVE AT THAT STAGE. AND INTERESTINGLY, OUR PROCESS, WE LOSE KIDS FROM STAGE I TO STAGE II. ONCE KIDS ARE POSITIVE AT STAGE II AROUND OVER 90% OF THEM WILL GO TO THE DIAGNOSTIC EVALUATION. 85% OF THE CHILDREN WE EVALUATED RECEIVED A DIAGNOSIS OF AUTISM, AND THAT IS ALMOST 300 CHILDREN. SO OVERALL, IN OUR AGENCIES OUR RATE OF DIAGNOSIS IS JUST OVER 10%. WHICH IS MUCH HIGHER THAN YOU EXPECT IN A PEDIATRIC COMMUNITY. THE PREVIOUS RATE BEFORE WHEN WE COMPARE KIDS GOT A DIAGNOSIS THROUGH OTHER MEANS, WAS TWO.5%. THE SO CLEARLY WE ARE ADDRESSING LOTS OF UNMET DIAGNOSTIC NEED WITH SCREENING INTERVENTION. AND THE SAMPLE WE ARE WORKING WITH REFLECTS RACIAL MINORITY LINGUISTIC MINORITY AND LOW-INCOME STATUSES. THE CHILDREN WE DIAGNOSED HAVE HIGHER RAISED OF ENGLISH LANGUAGE LEARNER STATUS AND LOW-INCOME STATUS SO WE FEEL LIKE WE ARE ADDRESSING HEALTH DISPARITY. WE WILL COMPARE OUR SITES TO OTHER SITES IN A QUASI-EXPERIMENTAL DESIGN, STRONGER EVIDENCE OF THIS, AND THEN WE HAVE ALSO DEMONSTRATED THAT RELATIVELY HIGH RATES OF SCREENING, 70% AND OVERALL COMPLIANCE, SUGGESTS THIS IS A FEASIBLE APPROACH AND WE CAN FURTHER IMPROVE OUR NUMBERS BY HELPING OUR EARLY INTERVENTION PROVIDERS FEEL MORE COMFORTABLE AT THE LATER STAGES OF SCREENING. IF WE THINK ABOUT PROCESS FOR A MINUTE, WHAT WE SEE IS THAT NON HISPANIC WHITE FAMILIES ARE COMING IN TO SCREENING LATER. BUT NOT SIGNIFICANTLY SO BUT THEY ARE GETTING DIAGNOSED SIGNIFICANTLY LATER. IF WE LOOK AT INCOME AS A TIMING FACTOR, WE SEE THAT THERE ARE SIGNIFICANT DIFFERENCES WHEN KIDS ARE COMING IN. THE POOR KIDS COME IN EARLIER. WHICH MAY BE BECAUSE OF PRE-TERM STATUS OR MAYBE BECAUSE OF OTHER RISKS. BUT THAT ADVANTAGE DISAPPEARED BECAUSE THEY ARE TAKING LONGER TO GO THROUGH THE SCREENING SYSTEM. IF WE LOOK AT ENGLISH AS A CONCERN, WE SEE THAT THEY ARE COMING IN LATER AND THEY ARE DIAGNOSED LATER. SO, I'M TO FACILITATE TIME, JUST GOING TO SAY ONE THING ABOUT SERVICE RECEIPT. WE CONTINUE DESPITE EARLIER DIAGNOSIS, SO OUR GAP IN DIAGNOSIS IS ONLY ABOUT TWO MONTHS. SO WE MOVE FROM DAVID MAN DELL WAS 1.7 YEARS OR THEREABOUTS TO TWO MONTHS. WHICH WE THINK IS PRETTY GOOD. BUT IN FACT, IT'S STILL NOT ENOUGH IN TERMS OF ADDRESSING SERVICE NEEDS. SO IF WE LOOK AT EACH OF THREE SOCIAL INDICATORS OF HEALTH DISPARITIES, WE SEE DIFFERENCES IN RACE ETHNICITY AND DIFFERENCES IN LANGUAGE, AND INCOME. BUT THE DIFFERENCES AGGREGATE AND WE KNOW THAT IN OUR COMMUNITIES, THESE LIKE POVERTY, TRAVELS WITH RACE ETHNICITY UNFORTUNATELY BECAUSE OF YEARS OF SYSTEMIC RACISM AND SO WHEN YOU GETY TO NO RISK FACTORS 100% OF THE KIDS ARE GOING ON TO HIGH INTENSITY SERVICES AND USUALLY HAPPENS WITHIN TWO MONTHS. AND IF YOU ONLY HAVE ONE RISK FACTOR B90% OF KIDS GET THERE. WITH TWO STILL NOT MUCH OF A HIT. BUT WHEN YOU GOAT 3 OF THESE RISK FACTORS, ONLY 30% ARE MAKING IT TO HIGH INTENSITY SERVICES. AND THAT'S A COMBINATION OF SYSTEM AVAILABILITY. SO CAN MY CHILD GET SERVICES IN SPANNICKISH OR ANOTHER LANGUAGE AND ALSO FAMILIES BEING ABLE TO ACCESS THOSE SERVICES AND FEELING EFFICACIOUS ABOUT THOSE SERVICES. SO WE ARE IDENTIFYING CHILDREN WHO MADE CONTACT WITH SERVICES SYSTEM. WE HAVE VARIOUS PENETRATION. SO WHAT IS HAPPENING IN OUR STATE MAY NOT TRANSLATE EASILY TO OTHER STATES. WE HAVE HAD MAJOR PROBLEMS WITH DEVELOPMENT AND RETENTION ALTHOUGH SITES ARE TRAINING FOR STAGE I. WE STILL NEED TO TRAIN FOR STAGE II. HUGE TURN OVER IN EARLY INTERVENTION SYSTEMS. AND WE ARE ALSO USING QUALITATIVE INTERVIEWS WITH EARLY INTERVENTION PROVIDERS AND PARENTS AND PEDIATRICIANS AND THESE INFORMED OUR IMPLEMENTATION WORK. I'M GOING TO END HERE WITH THIS QUOTE: FOR EARLY IDENTIFICATION OF AUTISM SPECTRUM DISORDERS, WE DO NOT YET HAVE BIOMARKERS. AND THIS IS ALSO TRUE FOR DEVELOPMENTAL DELAYS AND SOCIAL EMOTIONAL AND OTHER BEHAVIOR PROBLEMS AND DISORDERS. SCREENING EFFORTS NEED TO RELY ON PARENT AND OTHER CAREGIVER AND EARLY EDUCATOR AND PEDIATRIC AND EARLY INTERVENTION PROVIDER REPORTS AND OBSERVATIONS. OPEN COMMUNICATIONS SUPPORTED BY TRUSTING RESPECTFUL RELATIONSHIPS AND ACCESS TO CARE IS NECESSARY FOR DETECTION, DIAGNOSIS AND CONNECTING FAMILIES TO APPROPRIATE SERVICES SERVICES. [ APPLAUSE ] >> ANY QUESTIONS IF THE COMMITTEE? >> I LOVE YOUR WAY OF TALKING ABOUT ACCUMULATIVE RISK FACTORS. DO YOU THINK THE MECHANISM IS THE SAME? DOE WE NEED THE SAME STRATEGIES TO ADDRESS EACH OF THOSE RISK FACTORS? OR SOMETHING ELSE IS GOING ON? >> SOME OF THE STRATEGIES ARE THE SAME. I THINK WE WILL SEE SOME THINGS THAT ARE THE SAME AND THEN SOME THINGS THAT ARE DIFFERENT. THERE IS DEFINITELY A MAJOR PROBLEM FOR LINGUISTIC COMPETENCE IN THE EARLY INTERVENTION SYSTEM. SO JUST AS AN EXAMPLE, EACH TIME I DO A STAT TRAINING, I HAVE TO REMIND PEOPLE WE NEED SPANISH PROVIDERS TO COME TO THE TRAIN TRAINING. ACROSS THREE DIFFERENT PROGRAMS, I HAVE TO SAY, THIS LIST HAS PROVIDERS WHO ONLY SPEAK ENGLISH. I KNOW YOU HAVE SOME WHO SPEAK SPANISH. WE NEED THEM. BUT THEIR CASELOADS ARE MORE DIFFICULT. AND MUCH LONGER WAITS FOR SPANISH SPEAKING PROVIDERS. SO WE SEE LOTS OF KIDS GETTING SERVICES IN ENGLISH AND SOME PARENTS WILL SAY ENGLISH IS MY CHILD'S CHOSEN LANGUAGE. THEN THE PROVIDERS CAN'T REALLY TALK TO THE PARENTS IN A CONNECTED KIND OF WAY. >> WE HAVE TO MOVE ON. SO THE NEXT PRESENTER IS EMILY FEINBERG FROM BOSTON UNIVERSITY. >> THANK YOU. I REALLY AM PRIVILEGED TO PRESENT OUR PROJECT TO YOU TODAY AND IT'S NICE TO FOLLOW-UP ON AMY AND ALISON JUST TO PUT IN CONTEXT, OUR PROJECT FOCUSES ON THE FOLKS THATAL ACE IDENTIFIED WITH THE MULTIPLE RISKS AND AS I GO THROUGH, I THINK THAT WILL BE MORE APPARENT. I'D LIKE TO ACKNOWLEDGE OUR FUNDERS AND TO PUT US BACK TO THE SLIDE THAT ALICE PUT UP EARLIER, TO LOCATE OUR PROJECT, WHILE WE ARE FOCUSING ON SCREENING, OUR MAIN EFFORTS ARE FOCUSING ON THE CONTINUUM FROM SCREENING TO DIAGNOSTIC ASSESSMENT TO ENGAGEMENT AND SERVICES AND TO ENSURE THE MOST VULNERABLE FAMILIES SUCCESSFULLY MAKE THOSE TRANSITIONS THROUGH THE PROCESS OF CARE. WE CALL OUR PROJECT, PROJECT EARLY. AND I WANTED TO GIVE A OVERVIEW ABOUT WHAT WE ARE DOING. WE ARE FOCUSING ON LEVERAGING PRIMARY CARE SYSTEMS, URBAN, LOW-INCOME FAMILIES TO SUPPORT EARLY IDENTIFICATION AND ENGAGEMENT IN SERVICES. WE COME TO OUR WORK FROM DISPARITIES LENSE AND THE CHALLENGE THAT WE ARE TRYING TO ADDRESS IS REALLY HOW TO ENSURE THAT THE TREATMENT SERVICES AND ADVANCES IN TREATMENT SERVICES GOING ON ARE SHARED EQUITABLY AMONG ALL POPULATIONS. WE THINK WITHOUT EXPLICIT STRATEGIES TO ENSURE THAT THE MOST VULNERABLE POPULATIONS CAN ACCESS THESE ADVANCE THAT IS DISPARITIES CAN WORSEN. WE HAVE BEEN WORKING WITH ACADEMIC MEDICAL CENTERS AND FEDERALLY QUALIFIED HEALTH CENTERS TO TEST AN APPROACH WE CALL FAMILY NAVIGATION IT'S TAILORED TO THE FAMILIES WHO RECEIVE PRIMARY CARE IN THE SETTINGS AND MOST LIKELY TO EXPERIENCE DISPARITIES IN CARE. FOR THOSE WHO AREN'T FAMILIAR WITH NAVIGATION, IT'S ADAPT FRIDAY PATIENT NAVIGATION WHICH HAS ORIGINS IN CANCER CARE AND IT TIMES SUPPORT FAMILIES DURING DISCRETE CARE TRANSITIONS IN OUR CASE FROM THE TIME OF A POSITIVE AUTISM SCREEN UNTIL 100 DAYS AFTER DIAGNOSTIC ASCERTAINMENT. OUR WORK IS GROUNDED IN CONNICK CARE MODEL. MY TRAINING IS IN HEALTH SERVICES RESEARCH AND THINKING ABOUT ALLOW TO TWEAK THOSE SYSTEMS WHERE KIDS ARE RECEIVING CARE TO WORK BETTER FOR THEM. CHRONIC CARE MODEL CHARACTERIZES ELEMENTS OF A SYSTEM THAT CONTRIBUTE QUALITY CARE FOR PEOPLE WITH COMPLEX CONDITIONS. AND EMPHASIZES BETWEEN COMMUNITY AND HEALTH SYSTEMS AND ALIGNMENT BETWEEN DIVERSE SYSTEMS TO FOSTER INFORMED FAMILIES AND PREPARED PROACTIVE CARE TEAMS. OUR PROJECT GREW OUT OF OUR PREVIOUS WORK AND THE INPUT OF FAMILIES AND STAKEHOLDERS. IT HAS INTERGENERATIONAL FOCUS AND RECOGNITION OF THE NEED TO ADDRESS SOCIAL DETERMINANTS OF HEALTH AND PARENTAL MENTAL HEALTH AS PART OF OVERALL STRATEGY TO IMPROVE OUTCOMES FOR CHILDREN WITH AUTISM. THE DATA PRESENTS A NUMBER OF OPPORTUNITIES TO ADDRESS KEY QUESTIONS. SO WE ARE CONDUCTING A FAIRLY STANDARD HYBRID COMPARATIVE EFFECTIVENESS TRIAL TO ASSESS THE EFFECTIVENESS OF A PRIOR MARRY CARE-BASED INTERVENTION VERSUS TRADITIONAL CARE MANAGEMENT. OUR GOALS ARE TO SHORTEN THE TIME TO DIAGNOSIS AMONG CHILDREN SUSPECTED TO HAVE AUTISM, TO SHORTEN DEPLOYMENT OF AUTISM SERVICES AMONG THOSE DIAGNOSED AND IMPROVE ENGAGEMENT IN SERVICES. WE ARE CONDUCTING CONCURRENT IMPLEMENTATION TRIAL AND I WANT TO CALL OUT TO OUR COLLABORATORS, SARAH WHO IS HERE IN THE AUDIENCE, WHO IS HELPING LEAD THAT WORK. WE ARE ALSO CONDUCTING A TIME SERIES ANALYSIS TO EXAMINE SCREENING RATES OVER TIME AND THE EFFECTIVE AND ACTIVATED SCREENING PROTOCOL WHICH USING CDC ACT EARLY MATERIALS. OUR STUDY TAKES PLACE WITHIN THREE URBAN PRIMARY CARE NETWORKS THAT SERVE ETHNICALLY DIVERSE LOW-INCOME CHILDREN AFFILIATED WITH ACADEMIC HEALTH CENTER AND A MEMBER OF THE HEARSE FUNDED DEVELOPMENTAL AND BEHAVIORAL PEDIATRICS RESEARCH NETWORKS. AND THE SETTINGS THAT ARE PARTICIPATING, REPRESENT THE DIVERSITY OF CLINICAL PROGRAMS WHERE MANY URBAN LOW-INCOME CHILDREN RECEIVE THEIR CARE. OUR STUDIES LOOKING AT A NUMBER OF OUTCOMES. PRIMARY DIAGNOSTIC INTERVAL, AND TIME TO ENGAGEMENT IN ASD RECOMMENDED SERVICES. WE ARE ALSO LOOKING AT A NUMBER OF FAMILY-LEVEL INTERVENTION TARGETS PARTICULARLY DOMAINS OF SOCIAL SUPPORT, FAMILY DRESS PARENTAL AND FAMILY FUNCTIONING AND IN ADDITION, COLLECTING SOME OF THE DATA THAT DENNY MENTIONED THAT IS SHARED ACROSS OUR ASD PEDS NETWORK. WE HAVE A FAIRLY INTENSIVE FOLLOW-UP SCHEDULE OF FAMILIES THAT ARE PARTICIPATING IN THE STUDY. FOLLOWING THEM UP WITH IN-PERSON ASSESSMENTS FOUR TIMES OVER OUR STUDY PERIOD AND INCLUDING ADDITIONAL TELEPHONE FALL UP TO GET A SENSE OF SERVICE RECEIPT. AND WE ARE REALLY EXCITED THAT WE HAVE BEEN RECRUITED INTO A FAIRLY RIGOROUS CLINICAL TRIAL A POPULATION THAT REPRESENTS THOSE THAT RECEIVED CARE IN THESE SETTINGS. THESE ARE THE CAREGIVER CHARACTERISTICS TO START OFF AND YOU CAN SEE IT'S A LARGE REMINDY LOW-INCOME POPULATION. AND THAT WHAT IS INTERESTING POPULATION IS THE DIFFERENCES AMONG SITES WHICH YOU CAN'T SEE HERE. BUT IN NEW HAVEN, MOST OF THE FAMILIES ARE LATINO FAMILIES. IN BOSTON WE HAVE A LARGE PORTION OF IMMIGRANTS. WE HAVE OVER 70% OF FAMILIES BORN OUTSIDE OF THE U.S. AND PHILADELPHIA IT IS MOSTLY U.S.-BORN BLACK FAMILIES. OUR FAMILIES IN THE STUDY SPEAK 24 DIFFERENT LANGUAGES. AND WE HAVE NO LANGUAGE EXCLUSIONS FOR FAMILIES WHO ARE PARTICIPATING. AND THE CHILD CHARACTERISTICS, CHILDREN ARE COMING IN -- AT THE AGE WE EXPECTED AROUND 22 MONTHS. THEY COME IN AFTER A CONFIRMATORY SCREEN SO WE HAVE DISPROPORTIONATELY MALE. INTERESTINGLY, 44% RECEIVING EARLY INTERVENTION SERVICES AND MANY OF THEM SINCE QUITE A YOUNG AGE, WHICH WE THINK REPRESENTS SOCIAL RISK AND THE AFFECTS OF EARLY DIVERSITY OR DEVELOPMENTAL DELAYS. AND IN TERMS OF FUNCTIONAL ASSESSMENT, THEY ARE NOT LOOKING AT AMY'S SLIDE, NOT AS LOW FUNCTIONING AS WHAT AMY SHOWED FROM PREVIOUS STUDIES OF M CHAT VALIDATION, ON AVERAGE FUNCTIONAL ASSESSMENT WAS 1.5 STANDARD DEVIATIONS BELOW THE NORM. -- I WANT TO WALK YOU THROUGH THIS MODEL. WE HAVE FOUR COMPONENTS IN OUR MODEL THAT LOOK AT SCREENING, DECISION RULE FOR FURTHER INTERVENTION, AND THEN EXPEDITED DIAGNOSTIC EVALUATION AND REFERRAL TO ENGAGEMENT AND TREATMENT. WE ARE USING THE AVAILABLE SYSTEMS THAT EXIST WITHIN OUR COMMUNITIES AND PARTICULARLY WITHIN THE ACADEMIC MEDICAL CENTERS. BUT WE HAVE WORKED WITH THEM TO MAKE THEM MORE ACCESSIBLE TO FAMILIES AND TO IMPROVE SOME OF THE REALLY OPERATIONAL PROCEDURES WITHIN THE CLINICAL SETTINGS. I WANT TO FOCUS FIRST ON THE SCREENING COMPONENT. AND WALK YOU THROUGH WHAT IS HAPPENING. THE START OF CARE WHERE WE, WORKING IS THAT FAMILIES ARE ROUTINELY SCREENED WITH THE M CHAT AT 18 AND 24 MONTHS PER THE AAP RECOMMENDATIONS. THEY ALL OF THE SITES HAVE FAIRLY HIGH RATES OF SCREENING ALREADY AND MOST SITES IS OVER 80%. NOT DEALING WITH A QUESTION OF SITES THAT AREN'T SCREENING. BUT WHAT IS THE QUALITY AND HOW IS IT WORKING IN THIS POPULATION POPULATION. WE CREATED SCREENING ENHANCEMENTS I WOULD LIKE TO DISCUSS. AND THE MAIN SCREENING ENHANCEMENT IS A CENTRALIZED REFERRAL FOR POSITIVE SCREENINGS FOR CONFIRMATORY SCREENING. AND AT THAT TIME, WE READMINISTERED THE M CHAT AND THE FOLLOW-UP INTERVIEW IF REQUIRED AND THIS IS DONE OVER THE PHONE IN THE FAMILY'S PRIMARY LANGUAGE. WE LEARNED A LOT FROM THAT. IT'S ALLOWED US TO ADDRESS THE LITERACY AND LANGUAGE ISSUES IN THE DISCUSSIONS THAT THE SCREENERS HAD WITH FAMILIES. MANY OF THE SCREENING QUESTIONS HAVE CHANGED THROUGH DIALOGUES. PATIENTS SAYING I DIDN'T UNDERSTAND WHAT THAT MEANT AND REQUEST THE OPPORTUNITY TO CLARIFY WE HAD NOT ONLY SCREENS CHANGE FROM POSITIVE BECOME NEGATIVE BUT ALSO HAD CHANGES IN THE ANSWERS TO SPECIFIC QUESTION QUESTIONS. THE RESULTS OF THE CONFIRMATORY SCREENING ARE ENTERED INTO THE CHILD'S RECORD AND COMMUNICATED TO THE PRIMARY CARE PROVIDER VIA STANDARDIZED FORM AND WE USE FACTS. WE USE THE ELECTRONIC MEDICAL RECORD SYSTEM AND WE USE SECURE E-MAIL. WE HAVE A LOOP-BACK PROCEDURE WHICH ALLOWS US TO GET REPORTS OF ALL POSITIVE SCREENS OF CHILDREN WHO HAVE BEEN SCREENED IN THE PRIMARY CARE SAIDING AND LOOPED BACK TO THE PROVIDERS TO SEE WHETHER OR NOT WE CAN THEN APPROACH FAMILIES TO DO CONFIRMATORY SCREENING AND ALSO INVITE THEM TO OUR STUDY. AND THE THIRD PART OF THE ENHANCE CEMETERY ACTIVATED SCREENING. WE WANTED TO TRY IN A SITE THAT HAS HIGH LEVELS OF SCREENING, WE WANTED TO SEE IF A FAIRLY LOW-LEVEL INTENSITY INTERVENTION MIGHT MAKE A DIFFERENCE AND CONSISTENT WITH OUR CHRONIC CARE MODEL APPROACH OF TRYING TO CREATE MORE ACTIVATED FAMILIES, WE SENT OUT CDC ACT EARLY MATERIALS TO FAMILIES PRIOR TO THEIR 18 AND 24-MONTH VISITS. AND WHAT WE WILL BE LOOKING AT OVER TIME IS WHETHER THE FAMILIES WHO RECEIVE THE ACTIVATED SCREENS WHETHER ANY DIFFERENCE IN SCREENING RATES AND SCREENING RESULTS. THIS IS THE CENTRALIZED SCREENING AND REFERRAL. I DON'T WANT TO GO THROUGH THE NUMBERS RIGHT HERE. YOU CAN SEE THE FLOW. BUT I WOULD LIKE TO HIGHLIGHT SOME OF THE KEY LEARNINGS OF WHAT WE HAVE LEARNED FROM THIS. WE HAVE LEARNED THAT THIS APPROACH TO SCREENING IS ACCEPTABLE AND QUITE EFFICIENT. WE WERE ABLE TO REACH BY PHONE, 85% OF THE FAMILIES WHO WERE REFERRED TO US. AND WITHIN EIGHT DAYS. WE FOUND IT WAS EFFECTIVE WAY TO ADDRESS LITERACY AND LINGUISTIC BARRIERS IN THIS POPULATION. AND IN TERMS OF EFFICIENCY, IT IDENTIFIED CHILDREN FOR WHOM FURTHER FOLLOW-UP WAS NOT INDICATED. AND EVEN THOUGH TWO OF THE SITES, IT WAS STANDARD CARE TO DO THE M CHAT FOLLOW-UP INTERVIEW, WHICH SHOULD HAVE BEEN ONE WAY TO IDENTIFY THOSE CHILDREN MOST AT RISK, WE FOUND THAT WASN'T DONE WITH ANY QUALITY STANDARDS AND I THINK THE SITES WOULD ACKNOWLEDGE THAT OR WITH ANY CONSISTENCY. AND I THINK IN THE SETTINGS WE ARE WORKING ON AND WITH THE POPULATIONS WE ARE WORKING WITH, THE FEASIBILITY OF DOING THE FOLLOW-UP INTERVIEW DURING THE PRIMARY CARE VISIT IS REALLY QUESTIONABLE. WHILE THIS WASN'T THE MAIN PART OF OUR STUDY, WE ARE EXCITED ABOUT THIS BECAUSE IN MASSACHUSETTS UNDER NEW MEDICAID PROGRAMS ALL OF OUR MEDICAID POPULATION MOVES INTO ACCOUNTABLE CARE ORGANIZATIONS AND THIS IS THE KIND OF STRUCTURE THAT FITS REALLY WELL WELL WITHIN A ORGANIZATION THAT CAN BE DEPLOYEDA A WIDE SCALE DO SOMETHING THAT COULD INCREASE EFFICIENCY AND LESSEN THE BURDEN ON THE SYSTEM IN A WAY THAT IS FIT FOR THAT POPULATION. THE OTHER THING IS THAT CONFIRMATION OF RISK AND A POSITIVE SCREEN, NOT ENOUGH TO ENGAGEMENT AND THAT'S THE NEXT PART OF OUR INTERVENTION, FAMILY NAVIGATION. AND IT ALSO RAISED A NUMBER OF NEW QUESTIONS AND NEXT STEPS. WHEN WE LOOKED AT OUR DATA, WE WERE VERY SURPRISED THAT THE NUMBER OF CHILDREN SCREENING OUT IN OUR STUDY BY THE M CHAT FOLLOW-UP INTERVIEW, WAS EXTREMELY DIFFERENT THAN WHAT HAS BEEN REPORTED IN THE LITERATURE. ABOUT SOMEWHERE IN THE HIGH 60s IN PUBLISHED LITERATURE. I'D LIKE TO TALK NOW ABOUT THE FAMILY NAVIGATION STUDY. THIS IS A COMPARATIVE EFFECTIVENESS TRIAL OF FAMILY NAVIGATION COMPARED TO CONVENTIONAL MANAGEMENT NAVIGATORS ARE TRAINED IN COLLABORATIVE PROBLEM-SOLVING AND IT IS INTERVENTION WHICH HELPS GUIDE THEIR WORK. SO, HOW ARE THEY DIFFERENT THEN THAT ADDITIONAL CARE MANAGEMENT? AND I WOULD LIKE TO SAY, OUR CONVENTIONAL CARE MANAGEMENT IS WHAT WE CONSIDERED A VERY HIGH QUALITY MEDICAL HOME WOULD OFFER TO FAMILIES. GREATER THAN THE STANDARD OF CARE IN MANY PLACES. SO THE FAMILY NAVIGATOR DOES PROACTIVE OUTREACH. THAT REACH OUT AND WORK ON ENGAGEMENT AND WORK IN THE CLINIC AS WELL AS IN THE COMMUNITY AND FAMILY'S HOMES. THAT ADDITIONAL CARE MANAGES, EVERYBODY WAS ASSIGNED A CARE MANAGER AND I CAN TELL YOU WE HAVE ONLY 5 FAMILIES THAT ACTIVELY REACHED TOUT THEIR CARE MANAGER. BUT WHAT THEY HAVE DONE IS HELP SCHEDULE THE ASD EVALUATION. THEY MAKE SURE THAT REFERRALS TO BIRTH-THREE SERVICES ARE DONE. THEY HAVE RESOURCE GUIDES AND AVAILABLE FOR FAMILY INITIATED TELEPHONE SUPPORT. SO FAMILIES THAT HAVE CONFIRMED RISK ARE REFERRED TO THE STUDY RANDOMIZED IF THEY FAIL THE M CHAT ON THE FOLLOW-UP PROTOCOL. AND THEN THEY ARE RANDOMIZED TO ONE OF THE ARMS. THE PROTOCOL BEGINS AND ENDS 100 DAYS AFTER DIAGNOSTIC ASCERTAINMENT WHEN THE CHILDREN SHOULD BE ENGAGED IN AUTISM SPECIFIC SERVICES. I WANT TO INTRODUCE OUR NAVIGATORS. AND WE ASKED ALL OF THEM TO TALK ABOUT WHAT WAS MOST ENJOYABLE AND CHALLENGING ABOUT THEIR WORK. AND I'M NOT GOING TO READ OFF THEIR QUOTES HERE FOR THE SAKE OF TIME. BUT, I DO WANT TO EMPHASIZE IS THAT WE WORKED REALLY HARD TO REPRESENT AMONG THE NAVIGATORS, THE CULTURAL, RACIAL AND LINGUISTIC BACKGROUNDS OF THE FAMILIES THEY SERVE. AND WE ACTUALLY LEARNED SOMETHING FROM NOT DOING THAT. WE STARTED OFF WITH ONE NAVIGATOR WHO HAD GREAT EXPERTISE WORKING WITH FAMILIES THAT DIDN'T HAVE OR WAS NOT SORT OF FROM THE COMMUNITY, WAS NOT OF SIMILAR RACE AND CULTURAL BACKGROUND. AND WE HAD SIGNIFICANT PROBLEMS WITH ENGAGEMENT AND FOR A VARIETY OF REASONS LEFT HER POSITION AND WAS REPLACED BY SOMEONE THAT WAS A BETTER FIT WITH THE COMMUNITY AND THE DINNERS WITH ENGAGEMENT WAS IMMEDIATELY APPARENT. I WANTED TO HIGHLIGHT OUR BOSTON NAVIGATORS AND THIS IS JENNY FROM YALE. AND SHE TALKS ABOUT THE ON THE GROUNDWORK THAT NAVIGATORS DO WITH FAMILIES TO ENSURE THAT SOCIAL DETERMINANTS OF HEALTH ARE ADDRESSED SO THAT FAMILIES HAVE THE BANDWIDTH TO REALLY WORK AROUND THEIR CHILD'S DEVELOPMENT. SHE ASSISTED A HOMELESS ONE FIND SHELTER AND CONNECT WITH SERVICES. AND WHAT SHE COMMENTED ON SAID AT THE 3 MONTH FOLLOW-UP APPOINTMENT, THE MOTHER REPORTED SIGNIFICANT PROGRESS IN HER CHILD. CASES LIKE THIS MAKE BEING A FAMILY NAVIGATOR EXTREMELY REWARDING AND WE ARE EXCITED TO TAKE THIS TO THE NEXT STEP. IN OUR WORK, IN THE ACE, WE WILL BE TRAINING FAMILY NAVIGATORS TO BE COMMUNITY INTERVENTIONISTS. WE WILL BE HELPING TO SEE IF PEOPLE AT THEIR EDUCATIONAL LEVELS WITH THE COMMUNITY TIES, CAN EFFECTIVELY PROVIDE SERVICE, EVIDENCE-BASED TREATMENTS TO FAMILIES IN THE COMMUNITY. I THINK THAT WE ARE THRILLED TO BE PART OF THAT WORK AND TO EXPAND THEIR ROLE. WE ARE LOOKING AT A NUMBER OF NAVIGATION MEASURES. AND WE THINK THAT IS IMPORTANT BECAUSE THERE IS A LOT OF INTEREST IN NAVIGATION BUT IF YOU ASK EVERYBODY WHO SAYS THEY ARE INTERESTED, WHAT THAT MEANS, YOU'RE GOING TO GET MANY INDIVIDUAL ANSWERS. IN TERMS OF WHERE WE ARE GOING WITH THE FIELD, I THINK WE ARE AT A POINT WHERE WE NEED TO BE ABLE TO UNDERSTAND WHAT THE MODELS ARE AND TO DO RIGOROUS EVALUATION. WHAT ARE IMPORTANT, WHAT CAN WE FOREGO. SO WE ARE LOOKING AT THE NUMBER OF CONTEXT AND TYPE AND LOCATION, TIME SPENT BY NAVIGATORS WORKING WITH FAMILIES AND THE ISSUES ADDRESSED. AND WE UNCLE THIS WORK WILL BE HELPFUL IN -- WE THINK THIS WORK WILL BE HELPFUL IN MOVING THE FIELD FORWARD. AND WE DO HAVE A LITTLE -- SOME PROCESS MEASURES ALREADY. WE HAVE OUR INTERVENTION HAS THREE CORE IN-PERSON VISITS. THE NAVIGATORS ARE MEETING THAT TARGET. MEAN NUMBER OF VISITS IS IN PERSON VISITS HAS BEEN 4 AND THERE HAVE BEEN 30 ADDITIONAL CONTACTS WITH FAMILIES BUT MOST OF THESE HAVE BEEN BY PHONE, TEXT, AND SOME E-MAIL. SO IN TERMS OF EFFICIENCY, WHILE IT SEEMS LIKE A LOT OF CONTEXT, THEY ARE GENERALLY BRIEF AND THEY ARE ABLE TO USE THEIR TIME VERY EFFICIENTLY IN TERMS OF USING OTHER MODES OF COMMUNICATION. SO TO END, I WANTED TO JUST TALK A LITTLE BIT ABOUT THE OVERLAP BETWEEN OUR STUDY DESIGN AND THE TASK FORCE FRAMEWORK. AND THIS IS SOMETHING THAT IS NOT ONLY OF INTEREST TO OUR STUDY BUT TO ALL OF THE ASD PEDS NETWORK AND REALLY THINKING ABOUT WHAT DATA DO WE HAVE NOW, HOW DOES IT ALIGN WITH THE TASK FORCE ANALYTIC FRAMEWORK AND HOW CAN WE BEST USE OUR DATA TO MOVE THE TASK FORCE STATEMENT FROM AN I TO A CLEAR RECOMMENDATION? BRAS WE FOLLOW THE SAME PROCESS. AND LOOKING AT SOME OF THE DIFFERENCES AMONG RACIAL AND ETHNIC SUBGROUPS. WE HAVE BEEN FORTUNATE TO RECEIVE A SUPPLEMENT FROM NIMH WHICH WE ARE GOING TO USE TO CONVENE A ADVISORY GROUP, FORMER TASK FORCE MEMBERS TO GUIDE US IN THE ANALYSIS THAT WE THINK WILL BE MOST HELPFUL IN ADDRESSING THE TASK FORCE QUESTIONS. TO CLOSE, I LIKE TO ACKNOWLEDGE OUR TEAMS AND OUR THREE STATES. THEY HAVE BEEN TERRIFIC TO WORK WITH. WE HAVE LEARNED A LOT WORKING TOGETHER AS A TEAM. AND WE LOOK FORWARD TO WORKING WITH THE LARGER NETWORK AND IN THE ACE NETWORK IN OUR FUTURE WORK. THANK YOU. [ APPLAUSE ] >> DR. GORDON: NOW WE HAVE SOME TIME FOR COMMENTS OR QUESTIONS FROM THE COMMITTEE TO THE PANEL. >> I THINK IT WAS OUTSTANDING RESEARCH. THANK YOU. THAT'S WONDERFUL STUFF. I GREATLY APPRECIATE THE FACT THAT YOU BROUGHT IT THROUGH TO ITS FINALITY WHERE IT'S GREAT WE CAN DIAGNOSE AT 18 MONTHS BUT THEN WHO DOT FAMILIES DO? AND THE FACT YOU ENGAGED THE SYSTEMS. MY QUESTION TO YOU IS, ARE YOU USING MULTIPLE DIFFERENT TREATMENTS BECAUSE OF WHERE YOU'RE AT? IS THERE CONSISTENT SET OF STRATEGIES YOU'RE USING IN EACH GROUP AND IF SO, ARE YOU THINKING OF LONG TERM LOOKING AT SOME WAY OF TAKING THAT INFORMATION AND SEEING IF YOU CAN DO ANY OUTCOME-BASED RESEARCH BASED ON THAT? SO SEEING THE KID EARLIER, WHAT ARE THE OUTCOMES LOOKING LIKE? >> SO NONE OF THE GRANTS WERE DESIGNED TO PROVIDE INTERVENTION. SO, WHAT QUI DO HAVE ARE CHILDREN WHO ARE MULTIPLE SERVICES SYSTEMS AND RECEIVING A VARIETY OF DIFFERENT COMMUNITY SERVICES WE ARE ALL WORKING VERY HARD FOR THE INTENSE HITS, AND FAMILY SATISFACTION AND HOURS OF SERVICES AND SO WHILE WE ARE NOT PROVIDING INTERVENTION, IT WAS NOT WITHIN THE SCOPE OF THE RFA. I THINK WHAT YOU'RE RAISING IS REALLY IMPORTANT ISSUE AND WE ARE TRYING TO GATHER THAT INFORMATION IN THE BEST WAY POSSIBLE TO BE ABLE TO FOLLOW OUTCOMES AND OUR HOPE IS THAT WE WILL BE ABLE TO CONTINUE TO FOLLOW THESE CHILDREN LONGITUDINALLY IN A MORE OBSERVATIONAL WAY LOOK AT THEIR TRAJECTORIES OF DEVELOPMENT. >> SOCIETY SAME FOR OUR PROJECT IN TERMS OF NOT ADMINISTERING ANY OF THE INTERVENTIONS THAT CHILDREN ARE GETTING. BUT TRYING TO DOCUMENT. WE PARTNERED THANKS TO A SUPPLEMENT, THANK YOU. WE HAVE PARTNERED WITH THE DEPARTMENT OF PUBLIC HEALTH IN MASSACHUSETTS. SO WE POTENTIALLY WILL BE ABLE TO GET CHILDREN'S EXIT SCORES FROM EARLY INTERVENTION. SO WE'LL BE ABLE TO KNOW WHAT THEIR PATEL SCORES ARE AS THEY EXIT AND WE CAN LOOK THAT THE IN RELATION TO THE DENSITY OF SERVICES OR LACK THEREOF THAT THEY RECEIVED. >> YOU ENCOURAGE EVERYBODY TO USE THE WEBINARS ON THE WEBSITE FOR PROVIDERS? THE ONE FROM THE NAVIGATOR. >> YES. SO WHEN YOU SAY PROVIDERS, THERE IS LOTS OF DIFFERENT TYPES. SO IN TERMS OF EARLY INTERVENTION, OUR PROJECT IS DOING A LITTLE QUASI-EXPERIMENTAL TREATMENT STUDY WHERE WE ARE COACHING THEM AFTER THEY -- SO WE ARE HAVING THEM COME TO WEBINARS AND THEN DOING INDIVIDUAL MEETINGS WITH THEM TO MAKE THEM A LITTLE MORE ENGAGED IN THE CONTENT AND MAKING SURE THEY ARE UNDERSTANDING AND USING. WE ARE LOOKING AT STANDARDIZED TESTING AND UTILIZATION OF EVERYTHING SO WHEN SERVING ON LINE, YOU KNOW EXACTLY WHO IS IN THERE AND HOW LONG THEY ARE SPENDING AND WHAT TIME OF DAY. AND A LOT MORE ABOUT THEM IT'S AMAZING. SO WE WILL BE LOOKING AT THE DATA FOR THE PROVIDERS FOR THE FAMILIES TO COME BACK AND GET EVALUATED. I THINK YOUR QUESTION IS A GREAT ONE. THE RFA FOR THE ASD PEDS NETWORK WAS EXPLICIT OF WHAT WE WERE ALLOWED AND ENCOURAGED TO DO IN OUR GRANT AND COMPETING. AND SO, THE EXCITING PART IS AS WE WIND DOWN THE FIVE YEARS OF THIS CYCLE AND THE HOPE IS THAT WE MAY BE ABLE TO COMPETE TO CONTINUE OR WHETHER IT IS WITHIN THIS NETWORK OR OTHER WAYS, SO THAT WE MIGHT BE ABLE TO PLAN A TREATMENT STUDY AS THE NEXT STEP. I THINK THE FIRST STEP IS LOOKING ITY SCREENING PROCESS AND UTILIZATION. BUT NOW I THINK IF WE CAN STUDY AND THE WORK WE DO FOCUSES ON THE FAMILIES AND THE COACHING AND SO WE ARE NOW WORKING TOGETHER WITH THE NEW ACE NETWORK WITH FUNDING FROM NICHD. SO WE ARE GOING TO BE STUDYING PARENTS IMPLEMENTED INTERVENTION HOW TO ENHANCE THAT. BUT THE HOPE IS WITH ASD PEDS NETWORK WE CAN DO OTHER APPROACHES TO LOOKING AT THE TREATMENT AS WELL. >> AND IT WAS OUR HOPE THAT NOW KNOWING WHAT YOU KNOW ABOUT THE ASD PEDS NETWORK, WE WANTED TO INVITE YOU BASED ON YOUR KNOWLEDGE AND EXPERTISE, TO RECOMMEND SOME POTENTIAL RESEARCH DIRECTIONS FOR THIS NETWORK. SO I'D LOVE TO HEAR YOUR THOUGHTS. >> IS IT POSSIBLE FOR ME TO RESPOND TO THE QUESTION ABOUT -- >> DR. GORDON: SURE, GO AHEAD. >> THE ACT EARLY THAT WAS RAISED RIGHT BEFORE ALICE STARTED. SO I APPRECIATE YOUR COMMENTS ABOUT THE ACT EARLY CAMPAIGN. I THINK YOU RAISE MANY GOOD POINTS. THE CONTEXT OF OUR MEETING TODAY AND OUR PRESENTATION WAS ABOUT EARLY DETECTION OF AUTISM. SO IT'S A MUCH MORE NARROW 81 TEXT AND I THINK IT WAS GREAT YOU CLARIFIED THAT YOUR MISSION IS MUCH BROADER. YOU CLARIFIED A NUMBER OF THINGS. ALSO THAT YOUR -- I THINK IT'S INTERESTING THE PERSPECTIVE OF THE -- YOU WANT TO HAVE MILESTONES THAT 98% OR 100% OF CHILDREN ARE MEETING AND THAT THAT IS IMPORTANT FOR PARENTS. I WOULD LIKE TO SUGGEST THAT YOUR MILESTONES, AND I KNOW THEY ARE NOT YOURS, BUT THOSE ARE THAT ARE USED ARE BROADBRUSH STROKES. I THINK THEY ARE VERY BROAD OF WHAT CHILDREN ARE EXPECTED TO BE DOING. WE TRIED TO COME IN AND SAY A NEED TO UNDERSTAND BETTER MUCH MORE WITH A FINE BRUSH TO COME IN AND SAY, THESE ARE THE MUCH MORE DETAILED SKILLS THAT SHOULD BE EMERGING WHETHER IT IS THE AVERAGE CHILD BUT I THINK IF WE CAN GET IN EARLY, ALL CHILDREN SHOULD BE ABLE TO ACHIEVE THAT IF THEY ARE IN A GOOD RESPONSIVE PARENTING ENVIRONMENT. OUR MILESTONES ARE MORE DETAILED. EVERY TWO MONTHS. THEY ARE ABOUT -- ACROSS FIVE DOMAINS JUST LIKE WE SAID. THEY ARE BROAD BUT MONTH-TO-MONTH. SO IF THEIR CHILD FALLS BEHIND, IT GIVES THEM SOME INSTRUCTION. MORE OF A CURRICULUM TO HELP TEACH AND STRATEGIES TO TEACH THEIR CHILD. SO I THINK THAT THE TWO TOGETHER AND MANY OTHER STRATEGIES AS WELL MAY BE COMPLEMENTARY. I HAD THE CHANCE TO SPEAK WITH CAMILLE SMITH WHO IS ACTIVE AT THE FEDERAL LEVEL IN TERMS OF ACT EARLY CAMPAIGN AND I LOVE YOUR BIRTH TO 5 AND WATCH YOU THRIVE AND THE NOTION OF CELEBRATING MILESTONES. SO I THINK IT IS IMPORTANT TO SEE THAT THERE IS A NEED FOR BOTH. AND I HOPE WE BOTH MADE THAT POINT TOGETHER. >> DR. GORDON: LET'S THANK OUR PANELISTS. [ APPLAUSE ] WE ARE GOING TO TAKE A 10 MINUTE BREAK AND THEN RETURN AT 4:20. WE ARE GOING TO DO A ROUND ROBIN OF ANYONE WHO HAS ANYTHING THEY WOULD LIKE TO REPORT OUT TO THE COMMITTEEMENT I BELIEVE WE HAD ONE PREREGISTERED STATEMENT, IF YOU WILL. -- REPORT OUT TO THE COMMITTEE -- STEWART? >> SO THIS IS STEWART SHAPIRO FROM THE CDC. AT THE LAST MEETING IN OCTOBER, INVESTIGATORS FROM THE STUDY TO EXPLORE EARLY DEVELOPMENT GAVE BRIEF PRESENTATIONS WITH VERY LITTLE BACKGROUND AND RATIONAL FOR THE STUDIES CONDUCTED BECAUSE OF TIME CONSTRAINTS AND THE PRESENTATIONS WERE ON JUST A FEW OF THE MANY ANALYSIS THAT ARE IN PROGRESS. AND THE CDC APPRECIATED THE HELPFUL DISCUSSIONS ABOUT SEED AND THE PRESENTATIONS THAT OCCURRED DURING THE MEETING AS WELL AS COMMENTS PROVIDED TO CDC AFTER THE MEETING. THE PRESENTATIONS SHARED AT THE IACC MEETING WERE CHOSEN BASED ON THEM REFLECTING RECENT ANALYSIS AND INTERESTED OF THE IACC BUT THEY WERE ONLY A SNIPPET FROM THE ENTIRE SEED STUDY. AND SEED INVESTIGATORS ARE CONTINUING TO CONDUCT IMPORTANT ANALYSIS AND PUBLISHED RESULTS AND SINCE JUST THE LAST IACC MEETING, THERE HAVE BEEN FOUR PAPERS PUBLISHED WITH MANY MORE EXPECTED IN THE NEXT YEAR. >> THANK YOU, STEWART. I BELIEVE JERRY ON THE PHONE, YOU HAVE SOMETHING YOU NOTESSED TO CONTRIBUTE? >> -- YOU WANTED TO CONTRIBUTE? PERHAPS YOU'RE MUTED? >> CAN YOU HEAR ME? >> NOW WE CAN, YES. >> OKAY. >> SO I HAVE SEVERAL ANNOUNCEMENTS RELATED TO MY RELATIONSHIP FOR THE INTERNATIONAL SOCIETY OF AUTISM RESEARCH. ONE IS THAT WE ARE GOING TO BE PUBLISHING OUR FIRST POLICY BRIEF LATER THIS YEAR AND I THINK THE IACC WILL BE VERY INTERESTED IN IT. IT'S ABOUT ISSUES RELATED TO EMPLOYMENT FOR ADULTS WITH AUTISM. THERE WILL BE SOON A CALL FOR PROPOSALS FOR THE NEXT REGIONAL MEETING SO TO THE EXTENT THAT PEOPLE MAY BE INTERESTED IN MEETINGS IN AREAS AROUND THE WORLD WHERE WE TYPICALLY DON'T HAVE NSAR, YOU MIGHT WANT TO GET INVOLVED IN THAT AND THERE WILL BE SOON A CALL FOR ALSO OTHER PROPOSALS FOR POLICY BRIEFS. ACTUALLY THAT CALL IS NOW ALREADY OUT AND CLOSES FEBRUARY 1. THERE WILL BE A SUMMER INSTITUTE GOING TO BE A SERIES OF WEBINARS THAT WILL BE HELD THIS SUMMER AND WE'LL PROVIDE MORE DETAIL ABOUT THAT LATER. AND THEN THE ANNUAL MEETING WILL BE MAY 9-12 AND THAT IS OPEN AND IT WILL BE IN ROTSER DAM THIS YEAR. THANK YOU. >> THANK YOU. AND ALISON. >> I WANTED TO POINT OUT A COUPLE OF THINGS. WE JUST RELEASED AN RFA FOR UNDERGRADUATE SUMMER RESEARCH FELLOWSHIPS. WE ENCOURAGE EVERYONE TO APPLY IN THE PAST THIS HAS BEEN EYE GREAT OPPORTUNITY FOR SIBLINGS OF PEOPLE WITH AUTISM AND INDIVIDUALS WITH AUTISM TO GET INVOLVED IN RESEARCH. SO, YOU CAN FIND THAT INFORMATION ON OUR WEBSITE. WE ALSO PUT OUT AN ADDITIONAL RFA. WE DO THIS SEVERAL TIMES A YEAR FOR OUR ACCELERATOR GRANTS THAT ARE DESIGNED TO SUPPLEMENT EXISTING GRANTS IN CASE THERE IS UNEXPECTED DISCOVERY, TO SPEED UP THE RESEARCH PROCESS OR IMPROVE DISSEMINATION. OR TAKE ADVANTAGE OF UNEXPECTED FINDING. SO I ENCOURAGE PEOPLE TO APPLY FOR THOSE GRANTS. >> THANK YOU. OTHERS AROUND THE TABLE WHO HAVE SOMETHING THEY WOULD LIKE TO CONTRIBUTE? LARRY? >> IT'S LARRY WEXLER FROM THE OFFICE OF SPECIAL EDUCATION PROGRAM. SO 5 1/2 YEARS AGO WE FUNDED A RESEARCH CENTER THAT ASKED THE BASIC QUESTION, WHAT IS HAPPENING TO KIDS WITH DISABILITIES WHO ARE ENGAGED IN ON LINE INSTRUCTION? AND THE ANSWER WAS NOTHING. ESSENTIALLY NO SPECIALIZED INSTRUCTION, THERE WAS NOTHING TO MEET REALLY THE INDIVIDUAL NEEDS OF KIDS WITH DISABILITIES IN DIGITAL AND ON LINE INSTRUCTION. AND OBVIOUSLY WE WERE PRETTY CONCERNED. THERE WAS A HYG NUMBER OF KIDS WITH DISABILITIES OR IN FULL-TIME ON LINE INSTRUCTION. SO THIS SEPTEMBER WE FUNDED A 5 MILLION DOLLAR RESEARCH CENTER AND THEIR TASK TO TO DEVELOP SOFTWARE DEVELOPED TO CUSTOMIZE DIGITAL MATERIALS FOR KIDS WITH DISABILITIES. WE ARE NOT TALKING ABOUT ACCESSIBILITY. WE ARE TALKING ABOUT CONTENT ADAPTATIONS. THE SOFTWARE WILL ENABLE TEACHERS TO DIFFERENTIATE INSTRUCTIONS TO MEET THE NEEDS OF KIDS WITH DISABILITIES AND ENABLE EDUCATORS, CHILDREN WITH DISABILITIES, AND THEIR PARENTS TO SELECT SETTINGS AND PREFERENCES THAT PROVIDE ACCESS AND CUSTOMIZED INSTRUCTIONAL MATERIALS TO MEET THEIR INDIVIDUAL NEEDS IN DIGITAL OR ON LINE INSTRUCTIONS AND THE SOFTWARE WILL ALLOW THE MATERIAL TO SELF ADJUST SO IT'S PRESENTED AT APPROPRIATE INSTRUCTIONAL LEVELS BASED UPON AN INDIVIDUAL CHILD'S INPUT. ENCOURAGING THE SOFTWARE CAN BE EMBEDDED IN THE DEVELOPMENT OF COMMERCIAL MATERIALS T WILL BE AN OPEN-END RESOURCE. IT WILL BE AVAILABLE FOR FREE TO ANY PUBLISHER THAT WANTS TO USE IT. AN EXAMPLE WE GAVE IS IT COULD PROVIDE USER PREFERENCES AND CONTROLS THAT AUTOMATICALLY ADAPT INSTRUCTIONAL MATERIALS TO USE EQUIVALENT OR ALTERNATIVE RESOURCE SUCH AZTECS PASSAGES AT DIFFERENT LEXICON LEVELS OR MATHEMATICAL EQUATIONS WITH WHOLE NUMBERS BETWEEN 1-10 INSTEAD OF FRACTIONS OR DECIMALS. THE -- I HAVE NO IDEAS WHAT WE'LL GET FOR 5 MILLION DOLLARS. THAT'S THE FUN PART OF IT IT'S KIND OF A VENTURE CAPITAL BUT WE PUT THE MONEY IN THE HANDS OF INCREDIBLY SMART PEOPLE AND WE THINK IT WILL CHANGE DIGITAL INSTRUCTION FOR ALL KIDS NOT JUST KIDS WITH DISABILITIES. THAT'S OUR HOPE, THANK YOU. >> THANK YOU. ANYONE ELSE AROUND THE TABLE FIRST. >> SO THE NIND. AND NIH HELD A WORKSHOP ON DECEMBER 7-9. FOCUSING ON DEVELOPING PHYSIOLOGICAL AND FUNCTIONAL OR DISCUSSING PHYSIOLOGICAL AND FUNCTIONAL BIOMARKERS IN NEURODEVELOPMENTAL DISORDERS PARTICULARLY THOSE ASSOCIATED WITH AUTISM INTELLECTUAL DISABILITIES AND EPILEPSY. IT WAS A 2 1/2 DAY WORKSHOP. WE HAD OVER 130 PEOPLE ATTEND. QUITE A BIT OF PEOPLE FROM INDUSTRY. WE HAD THE FDA, NIH, ACADEMICS, CLINICIANS AND RIGHT NOW WE ARE STARTING TO PUT TOGETHER ALL THE NOTES AND WE ARE GOING TO WRITE A WHITE PAPER AND WE CAN -- THERE IS QUITE A FEW RECOMMENDATION THAT IS CAME OUT OF IT. WE ARE HAPPY TO SHARE WITH EVERYBODY AT SOME POINT. >> THANK YOU. GO AHEAD. >> SO I WILL ECHO DR. GORDON'S EARLIER STATEMENT ABOUT AUTISM EARLY SCREENING AS ONE OF THE PRIORITIES HERE AT NIH AND AS YOU RECALL THAT DR. WEALTHER BEE MENTIONED THAT SHE FUNDED ONE OF THE NEW AUTISM CENTERS OF EXCELLENCE. WORKING IN THE AREAS OF EARLY SCREENING AND I WOULD LIKE TO REITERATE THERE ARE TWO OTHER AUTISM CENTERS OF EXCELLENCE ALSO WORKING IN THE AREAS OF EARLY SCREENING. ONE IS THE AUTISM CENTERS OF EXCELLENCE. AND TWO PIs. DR. DAWSON AND DR. COLLINS. WORKING ON CO-MORBID ADHD IN THE DIAGNOSIS OF AUTISM ALSO DR. DIANA ROBINS AT DREXEL UNIVERSITY WHICH IS WORKING ON RANDOMIZED CLINICAL TRIALS OF AUTISM SCREENING. SO, AT NIH, VERY EXCITED ABOUT THE 9 NEW AUTISM CENTERS OF EXCELLENCE AND DR. KEVIN, ALSO THE PRINCIPAL INVESTIGATOR OF ONE OF THE -- SO I'M SURE IN YEARS TO COME, WE WILL GET TO KNOW THEIR SCIENCE AND HEAR THEIR PRESENTATIONS. >> THANK YOU. ANYONE ON THE PHONE? >> THIS IS LEWIS. I HAVE BEEN LISTENING IN BUT I DON'T THINK I HAVE ANYTHING SUPER IMPORTANT. >> OKAY. >> SORRY. I ALSO -- >> ONE MORE FROM NICHD. ALSO -- PRINCIPAL INVESTIGATOR -- >> HE WAS WORRIED FOR A MINUTE. ARE. >> IT'S BEEN A LONG DAY. >> ANYONE ELSE ON THE PHONE HAVE AN ANNOUNCEMENT THEY'D LIKE TO MAKE? OTHERWISE WE'LL WRAP IT UP. OUR NEXT MEETING WILL BE ON APRIL 19 A SWITCH FROM THE 18 AND THE ROOTS A THURSDAY AND A LITTLE UNUSUAL. BUT, WE REALIZED WE ARE CONFLICTING WITH A IMPORTANT AUTISM BIOMARKERS CONSORTIUM MEETING THAT HAD BEEN PREVIOUSLY SCHEDULED ON THE SAME DAY AND WE THOUGHT THAT WAS NOT WISE. SO, WE LOOK FORWARD TO SEEING œHERE WE DON'T KNOW WHERE IT WILL BE YET BUT WE'LL LET YOU KNOW. >> WE ARE LOOKING FOR A LOCATION AND WE'LL LET YOU KNOW. AND WE WILL KEEP YOU INFORMED OF THE ANNUAL AUTISM AWARENESS MONTH EVENT HELD BY NIMH SO I WILL SEND THAT INFORMATION WHEN IT'S READY AND WE LOOK FORWARD TO AUTISM AWARENESS MONTH IN APRIL. THANK YOU FOR BEING HERE. [ APPLAUSE ] >> I WANT TO THANK SUSAN AND HER ENTIRE STAFF FOR PUTTING ON ANOTHER GREAT MEETING. THANK YOU. [ APPLAUSE ]